Disability Chic

After living on my own for a year and half, and periodically have to call my dad to come rescue me after I fall down, I’ve finally bit the bullet and got a medical alarm installed. I’ve delayed up until now, because there was still a part of me that wasn’t ready to admit I needed one. Even so I was totally confused when both my doctor and the lady who came around to install it, told me very firmly “But you must actually wear it!” Why would I go to the trouble of getting one, if I wasn’t going to wear it? And then I realised what they meant. All the time, not just at home when I’m alone. All the time, out in public.

Wasn’t it bad enough that I’d swapped pretty bracelets for a medic-alert; high heels for crocs; and already had a number of “disability accessories” like Molly Stick and wrist splints? Now I had to add a giant hunk of plastic hanging around my neck as well?

I get why it’s necessary to wear it all the time, and after a moment of feeling sorry for myself I put away my vanity and got over it. I even started coming up with jokes about it, for if anyone asked what it was. But then I wondered if that was the right response.

A few weeks ago, I found myself crying over some posts about crocs made on a public page. I was really annoyed at myself, partly because it was such a shallow thing for me to get upset about, but also because I’m usually pretty good at ignoring silly comments on the internet. I’ve posted before about my reactions to the irrational amount of rage and nastiness directed towards crocs, but this time it was a bit different. The gist of the posts this time: No one will ever find you attractive if you wear crocs; you must have given up on ever having sex; you make other people feel nauseous. It was honestly like having someone take the worst things I’ve ever felt about myself, in my darkest moments, and post them on facebook for me to read.

I didn’t respond to any of the comments on the page, one because people on the internet are crazy, and two because I knew exactly what the response would be. “Geez, it was just a joke!” or “Have a sense of humour.” And if I explained that actually sometimes there are people in my situation, who are allergic to the glue used in shoe production, and/or live with chronic pain and disability, I would get irritated responses that “that’s not what this post is about” and “God, some people have to get offended by everything”.

The thing is, I do have a sense of humour. You have to if you’re in my situation, but I feel like these comments crossed over the line from good-natured teasing to self-esteem destroying. Even when comments don’t cross that line, sometimes I don’t want to have to have sense of humour about how I look. Sometimes I just want to feel like I look “okay” or "nice" even, not “okay, despite...”

When I posted about crocs before, I heard from several women living with chronic pain that they had also been brought to tears by nasty comments made in person about their footwear, or felt shunned by other women in places such as school pick ups because of it. I had a job interview recently and found myself seriously considering which of wearing crocs, or wearing shoes that would make me hobble and want to scratch the entire time, would make a worse first-impression. These comments might be “just a joke” but they have a knock on effect, to people’s self-esteem and to what other people think are appropriate comments and behaviour in real life, not just on the internet.

The day after all this, a complete stranger came up to me and told me she liked my shoes, and I almost dismissed the compliment because I was sure it must be a joke. Then I realised that I have actually had a number of genuine compliments about my shoes in the past. I’ve had people who really dislike crocs comment that bright purple shoes with black tights do look cute, and there were a number of people who said that they wished their feet were small enough for the pink butterfly ones.

The other day, one of my friends commented that she liked my necklace, without knowing it was a medical alarm. So I’m not going to feel bad about having to wear it, and I’m not going to make jokes about it either, because ultimately it feeds into that feeling of having to laugh off: “I would look okay, if it wasn’t for...” The lady who installed the alarm for me told me to make it trendy, and that’s what I’m going to do. If that makes you think no one will ever find me attractive, then for god’s sake keep that to yourself, because that is your issue. Not mine.

Thanks for reading,

Little Miss Autoimmune

Hungry, Hungry Hippos

I think most of my generation in New Zealand grew up watching repeats of Friends and The Simpsons every weeknight. In most situations you can make a reference to either show, and everyone in the room will have seen the episode so many times themselves they instantly get what you mean. Personally every time I hear an oven timer go off, I feel the urge to yell: “My Fajitas!” and when my hair gets particularly curly: “It’s the humidity!” And I know every time one of my friends mentions Hungry, Hungry Hippos that what they’re really playing is the waiting game.

It’s possible another diagnosis may be on the horizon for me. Nothing confirmed yet; it could turn out to be absolutely nothing. I wasn’t going to post about this, until I knew for sure either way but then I realised “the waiting game” is a big part of living with chronic illness. Whether it’s test results, approval for new medications, treatments to start working, or answers to the cause of new symptoms, it feels like we’re always waiting for something.

I went to see my GP to get some forms filled in last Monday, and in the course of the appointment, I asked her to check my blood pressure. I was pretty sure it was low. I’ve been having more and more dizzy spells and headaches lately, especially upon standing up from sitting or lying, and I’ve had a couple of unexplained falls as well. It was, as I suspected, low but we were a little surprised by how low. At the time it was taken, I was feeling fine which suggests it may be dipping even further when I’m having dizzy spells. My GP suggested I should start drinking coffee to raise it, and when I mentioned I’d found drinking water with added electrolytes helped, she checked my blood test results and found my electrolytes levels are also low. I think there are probably a lot of reasons this can happen, but the one that my doctor thinks it could be is Addison’s disease. I don’t know too much about it, and I’m resisting to urge to google anymore because the Wikipedia page freaked me out. From what I have read, I do have all the symptoms, but given that they are all fairly non-specific symptoms and could be attributed to any one of the other conditions I already have, that doesn’t really mean much.

Autoimmune disorders tend to run in packs, so after you’ve been diagnosed with a few it’s not really all that much of a surprise when another one is added. Even so, I have to admit the possibility of this one has unsettled me a little, especially as I hadn’t even considered anything new might be wrong, before my doctor brought it up. My GP said it’s quite hard to diagnose, and she’s on leave for the next month, so for now it’s just extra blood tests, self-monitoring of my blood pressure... and playing the waiting game.

Whenever you’re waiting on something the advice everyone gives is don’t think about it, but as we all know that’s like trying not to think about elephant when someone tells you not to think about elephants. Still, I’m doing my best not to worry about it at least.   

The waiting game sucks. I really need to get Hungry, Hungry Hippos.

Thanks for reading 
Little Miss Autoimmune

Kindness Is The Cure For Everything

I have been struggling lately. Basically everything in my life apart from my health is going really well, however, I’m in more pain than I have been for a while, and have been feeling quite unwell both from symptoms of disease and from medications. The downside of everything else going well is that I am a lot busier than I am used to being. With my health being so good, it means I am tired and emotional most of the time, something which does not fit very well into being busy.

It’s quite hard to talk about this stuff for a lot of reasons. In part it’s that I find it quite uncomfortable to talk seriously about a lot of this stuff. The fact is I do get quite upset and scared by a lot of the random things my body does, but a lot of the time saying that aloud just makes me feel more sad and scared. One of the other reasons is that talking about things like this often makes people feel like they have to offer solutions, try and fix the problem, or reassure me that the problem isn’t really as bad as it seems. Often it’s not really possible to do those things, and that then makes them feel sad and scared too.

When I worked in mental health, we often talked about not trying to fix people’s problems or rescue them from them, but just walking along side them as they work through them themselves. I think this applies not just to mental health, but to physical health and really to most times of stress whatever the situation or cause. The other day I experienced the most amazing example of this being true.

I was walking home from the bus stop, and I started to cry. There wasn’t really anything in particular wrong. I was cold and tired, and in a lot of pain, but that didn’t feel like enough of a reason to cry because it wasn’t anything new or different. It felt stupid and self-indulgent to cry just for that, especially in public. I was trying to hide it and hold it together until I got home, but this woman saw me from where she was sitting and she ran after me to ask if I was okay.

There’s something very odd that happens when someone is nice to you when you’re not feeling good. Though I tried to insist I was fine, I immediately burst into full-on tears, a reaction that would have been more appropriate if she’d been horrible. The woman asked if I had far to go and if she could walk the rest of the way with me. I refused at first. I didn’t feel I could ask her to go out of her way, just because I was not feeling well. It was cold and raining – no one should have to walk out of there way in that! But she insisted, saying it was not a day that anyone should walk alone.

She took my bag from me, and walked with me the rest of the way home. We talked, and I cried some more. When we got to my place, she asked me if she could say a prayer for me. She asked God to be with me and walk beside me, just as she had walked beside me. She then gave me hug and thanked me for giving her the opportunity to let her help me. I was so astounded to hear her thank me. I was stumbling through an attempt to express the immense amount of gratitude I had for her, and she was thanking me?

I was amazed to have a complete stranger show me such kindness and generosity, and that in itself made the things I was dealing with so much easier to face. In the space of a five minute walk, I went from feeling like I wanted to curl up in a hole and forget everything to feeling like perhaps everything was going to work out okay because there are some truly wonderful people in the world, and that fact in itself is enough to make anything easier to bear.

I realised later that this was quite literally an example of what we had talked about, with walking beside people rather than trying to solve their problems. There wasn’t a way for her to make me not be sick or in pain, but to have her be there with me in that moment when it felt too much was the most powerful and amazing thing.

This was such a profound experience for me, but I hesitated at first about sharing it with anyone. I didn’t want it to sound like a silly overly-sentimental story, or like I was trying to convert anyone into something. In the end I decided that it was an unusual and beautiful story, and that made it worth sharing whatever people thought of it. I put the story up on facebook, and I had many people tell me it made them tear up, or that it made their day.

I want to share this story, because kindness should be shared. So many problems can’t be fixed or cured, but there are very few situations that can’t be helped by a little kindness. The best way I can think of to thank Esther – the woman who walked with me – is to pay it forward and pass on her kindness to others. In most cases I probably won’t be able to solve other people’s problems, just as no one can fix mine. But we can be there for each other, and walk together through the rain.

Thanks for reading

Little Miss Autoimmune

Accident-Prone Hormones

The last couple of days have been a bit rough. I knew they were going to be. I realised last week that it was highly likely several factors – work stress, vitamin D being due, PMS, medication changes and side effects – were all going to combine into a flare. So I’d done my best to make sure I could get through it as smoothly as possible. What I wasn’t counting on, was a sudden and dramatic increase in my own accident-prone tendencies. In the last 24 hours I’ve had several mishaps ranging from completely-silly, to came-very-close-to-serious-injury in severity, and it’s left me in a pretty sore state.

I was talking with some friends the other day, about those “facts” that you believe for years because someone you trust told you them. For example, for years I believed my grandmother had stigmata because when we were little my sister told me she did. I don’t think my sister remembers this, so I have no idea whether she really believed it or if she was just messing with me, but at the time I took it as fact and it wasn’t until years later I thought to question it.

When I was a teenager, my mum told me that having PMS interferes with your depth perception. At the time, I took this as fact, not least because when she told me that I’d just opened a door into my own forehead, then misjudged the gap and hit the doorframe on the way through. She told me that she had exactly the same type of accidents herself every month.  

I didn’t question it, at the time. Honestly, I was too relieved to question it. For years I’d felt like I was loosing my mind, when I couldn’t do something as simple as walk through a doorway without injuring myself (just try explaining to someone that you really did get a black eye walking into a door, and see if they believe you) and she has finally offered a seemingly plausible explanation.

Last night after my dad came and rescued me from one of my more nasty accidents, my mum’s explanation popped into my head. For the first time, I wondered if there was any scientific basis to this, or if it was just something Mum had said to make me feel better. My PCOS symptoms have been really out of whack lately, so if it is true that could explain why the number of accidents has been worse, but I’m somewhat suspicious that I’m making connections out of random events.

So here’s my question – does anyone else experience this with PMS? Particularly anyone with PCOS/Endo or anything similar? Also if anyone with a medical background knows if there’s any truth to the idea that hormones have an impact on depth perception, I would love to hear your thoughts.

Thanks for reading

Little Miss Autoimmune

And we’re back to lupus... I think

I had an appointment with my rheumatologist on Thursday. I wasn’t really expecting much to come out of it. I don’t mean that as a criticism of her, just that I was under the impression that I had no treatment options left. I wasn’t expecting that she would be able to do anything for me and I really didn’t think the confusion over the diagnosis was going to change.

Surprisingly, I was okay with this. I blogged a few weeks about the pitfalls of hope when it comes to believing illnesses will get better, and I think the opposite can be true. If your expectations are low, and you find a way to be okay with that, then anything above those expectations happening is a bonus. There were a couple of questions I wanted to get answers to, and I was really hoping that a cortisone injection in one of my fingers was a possibility, but other than that I was okay with nothing really coming out of the appointment.

It turns out the joint in my hand is too small for a cortisone shot. I realised afterwards that I wasn’t sure if my rheumy meant this is always the case with finger joints, or it’s just because my hands are unusually small for an adult (they’re the same size as my nine-year students’) but either way it wasn’t going to happen. Instead my nurse gave me an intra-muscular steroid shot. I’d mistakenly thought this wasn’t an option at the moment, as I’d got the time frame wrong as to how often you can have them, so it was a bonus to be able to have something that would quickly get some of my out-of-control symptoms back down to a more manageable level.

I was pleasantly surprised to find I do actually have a couple of other medication option still to try. My rheumy was at great pains to point out that a couple is not many, and as always there are risks with any medication, but given that I thought I had zero options left a couple is good news. I know very well that these may not work and, since I have to wait for some blood tests to come back before I get the go ahead to start, it may turn out not to be possible for me to even try. I’m not allowing myself to get too invested in the idea that these will help but, at the same time, they have more chance than nothing.

Then there was the diagnosis situation. During the appointment, I thought my rheumy had actually come to the conclusion that I didn’t fit any diagnosis clearly. I was pleased to find that I was fine with that. In the past I have unintentionally placed a lot of significance on the diagnosis, and all that has done is left me upset and confused. I cried when I first got the diagnosis of lupus, and I cried when the diagnosis went away again so clearly neither option was going to make me happy.

At the end of the appointment, my rheumy suggested of the medication options available we go with the one that works best for lupus, and she handed me a blood test form which had PsA and SLE (Psoriatic Arthritis and Systemic Lupus Erythematosus) written under clinical details. My nurse explained that sometimes people do have both running concurrently, and that that may explain why I’ve managed to simultaneously get better and worse on certain medications as they work differently with different diseases. I don’t really know if any of that amounts to a diagnosis. It sort of seems like it, but the last time someone actually said to me “yes, it’s definitely lupus” and yet later they were surprised when I thought I had been diagnosed with it, so I’m not making any assumptions.

The thing that I do know for sure, is that I was okay with it either way. I didn’t feel the need to cry, nor did I feel any relief or positive emotion about it either. The strongest thing I felt straight after the appointment was a desire to go buy some chocolate, but I think that was more down to the fact that I had the injection and four vials of blood drawn all within the space of about five minutes.

I think the reason I’ve placed significance on diagnosis in the past is that there was still a little part of me that felt maybe it would change something, and I was in a round about way still looking for that “better.” Of course I would still really really like it if things did get better – I wouldn’t be looking at new medications if I didn’t – but I’m doing my best not to hang everything on that. My new mantra is going to be: “Things are okay now, and anything else is just a bonus” and I’m going to do my best to listen to my own advice.

Thanks for Reading 

Little Miss Autoimmune

Move it... and sometimes lose it anyway.

I think every chronic illness patient has a phrase which they particularly dislike hearing. For some people “You’re too young!” or “But you don’t look sick?” really hit a nerve. Personally I don’t mind those so much. I think they come from a place of misinformation and while it can be irritating to hear them over and over again, it’s the not the person’s fault if they don’t know what they don’t know.

The one that really irritates me is: “Move it or lose it.” I dislike this, because I don’t think people have any idea what it really means, they just like parroting catchphrases and particularly like catchphrases that rhyme. I also dislike the fact that this is offered up as a piece of advice. For one thing, when it comes to autoimmune forms of arthritis yes, absolutely exercise is important, but you may still “lose it” anyway. Last week one of the joints in my finger stopped moving completely and has been locked in place since. It is somewhat swollen, so I’m hoping that maybe if the swelling goes down it will “unlock” but it could very well be stuck permanently from now on. I take pretty good care of my hands. They’re the only joints I consistently do any physio exercises for, and everyday life provides plenty of movement for them, but they are also the area of my body where I have lost the most range of movement and function.

When it comes to degenerative forms of arthritis (for which move it or lose it is most relevant) it’s still just a catchphrase not advice. It doesn’t explain what type of movement is helpful, and doesn’t do anything to address any barriers. When I hear this, the first thing I picture is someone swinging their joint wildly back and forth repetitively – that’s not a way to prevent arthritis; that’s how you give yourself RSI. It really should be “move it or lose it, but don’t forget to plan and pace!” But I guess that isn’t as catchy.

Perhaps you may think I’m being unfair – the phrase is just supposed to be the reminder and motivator not the sum total of the treatment plan. Unfortunately, I know from my mother’s experience that this isn’t always the case. When she began to have severe pain in her fingers and one of her joints kept locking, my mum went to the doctor who told her “It’s osteoarthritis. Move it or lose it.” and no, I’m not paraphrasing, that was word for word all he had to say on the subject. He didn’t even look at her hands. While my mum was at the time at an age where onset of osteoarthritis was more likely than an autoimmune form, I found it astounding that given she also had psoriasis, psoriatic arthritis in a close family member, and the joints affected were DIP joints (the end finger joints; most often affected in PsA.) that he wouldn’t at least investigate. I insisted Mum go back, and at the very least get some clear guidance on what exactly she should be doing. She was again dismissed with “move it or lose it” as her only advice.

Swollen DIP joint

(Distal interphalangeal joint)

Some months later, (after she had decided to retire as she was unable to complete parts of her job without full use of her hands) Mum saw another doctor, who actually looked at her hands, and it turned out she did not have osteoarthritis but a treatable condition. The treatment plan included complete rest of the joint for two weeks, so the “move it or lose it” had in fact been exacerbating the condition.

“Move it or lose it” is not advice, nor is it in itself a treatment plan. It would be like telling someone who has depression to “turn that frown upside down” in place of offering a referral to counseling. If you’re a medical professional, please realise that when it come to exercise it’s not the fact that we need to do it that’s confusing people. It’s the how and what to do that’s the problem. So if you’re still really keen on using rhyming catchphrases, then by all means say “move it or lose it” but follow it up with a referral to physio or at the very least a proper explanation and plan.

Thanks for reading,

Little Miss Autoimmune

The pitfalls of hope

I wrote this in the middle of the night a few days ago. I wasn't going to post it, because usually things I write in the middle of the night are either incoherent or excessively maudlin, but I read over this tonight and it doesn't seem too bad! Feeling way more positive now either way. 

I am sad.

That seems like a stupid thing to start a post with. My goal has always been to make this a positive place. When I started this blog, I knew I was taking something that was my own personal journey and making it public. I don't think I could have put into words at the time why I wanted to do this. I think I had an idea that perhaps it would help other people, but also the idea that it would help me too. I've always been one of those people who narrates their own life inside their head - I say that like I know for sure that other people do this. I don't really. I guess I just assume that if shows like Scrubs and Grey's Anatomy are anything to go by, there are other people out there with a voice over inside their head trying to make poignant conclusions out of the random things that happen to them. Or at the very least conclusions, without the poignance.

Right now, it's the middle of the night. I got out my computer with the hope of putting my insomnia into productiveness by working on my latest novel project but instead I ended up writing this. Because I am sad and I am frustrated and in the middle of the night there aren't that many people you can say that to.

I read something on someone else's blog recently about how the author felt she may have exaggerated her illness, not to her doctors but to herself. I do this. I think we all do this. In the middle of the night, when the pain is bad, or if my body has become rebellious in some other way, I panic. I feel that this is the end. I have lost the use of that limb, and normal function will never return.

Tonight trying to open a jar of peanut butter, left me screaming in pain. I paced back and forth in the kitchen, clutching my hand and shaking, trying to fight back the nausea and tears the pain had induced. And then I cursed myself for being so melodramatic and laughed a little too, at how ridiculous it would all look if anyone were there to see it. Eventually I managed to open the jar with a pair of scissors, which made me feel a disproportionate amount pride at my own ingenuity.

This isn't why I'm sad. The pain in my wrist eventually eased, and I could laugh at my own panicked belief that it wouldn't. I thought of the icepacks in the freezer, the splint in my bedside drawer, and all the other back up plans that I have in place but that seem so far away in the moments I need them the most.

And I started to feel a little more positive. And I started to let my dark sense of humour construct the event into a funny story I could tell someone later if I chose.

Mostly I am fine with the way things are. I was going to say I hate the fact that I'm sick, but I don't know if that's accurate. Hating something takes energy and I'm not sure I even give it that. I manage being sick. Sometimes I panic. Sometimes I cry. Lots of times I laugh about it. And all in all it's okay.

And then something happens that give me hope, and that kind of messes things around for a while. Don't get me wrong, I have hope all the time. I have hope that I will achieve things despite my illness. I have hope that each day will be a happy one. I have hope that my life will be a good one, whatever it is that that means. But I don't have hope that my illnesses will get better.

To me, having hope that my illnesses will improve or go away means that I put my life on hold. Even if it's not what I intend to do, it's what happens. Why force myself to get out of bed and do something now, while I feel so ill, when I could wait until I am well and do it then? I have to have the belief that this won't get better, because I have to believe this is my life and live it like I'm not going to get another chance.

The reason that I am sad and frustrated is that recently I let the wrong kind of hope sneak in. Even though I tried not to, I let myself believe that in seeing the specialist and having some tests done, there might be an end to my stomach problems even if everything else stayed the same. This wasn't just a naive optimism on my part; at least I don't think it was. I knew very well the tests may not show anything - in fact, I had a strong suspicion they wouldn't. What gave me hope was the assurance from the specialist that even if the initial test showed nothing, there were steps we could take to improve things. Even if the end diagnosis was not one of "disease", but just of "dysfunction without known cause" there would still be a course of action to take.

It sounded so reassuring. I felt relief that I would have a direction at last. Even if it wasn't a cure, and the likelyhood was that it wouldn't be, I would at least know what I was supposed to be doing instead of just fumbling around hoping that I at least wasn't making things worse.

So the tests didn't show anything. I was prepared for that. But I wasn't prepared for the fact that I found this out in a letter, which I didn't totally understand, and did not include the promised plan of action. I wasn't prepared for the letter to talk about "part of the bigger picture" leaving me wondering if this was a reference to my medical issues which I didn't understand, or an pseudo-philosophical comment. I wasn't prepared for the fact that I actually don't know what happens now. And I wasn't prepared for the fact that all this not understanding makes me feel stupid and scared to ask.

This is where I'm at right now. Sad and frustrated. I should say, none of this is really a comment on the specialist in question. I do wish he had phoned me with the test results, as he said he would, rather than sending a letter. I don't think I would be this confused if I had had the opportunity to get clarification, but I would probably still be sad because I had let myself hope for that "better" and that was probably never going to happen.

I do know these feelings will get better. I know I will let go of that hope I was feeling, and I'll go back to feeling okay about how things are and not trying to force them into the picture of something I wish they were. I will laugh about this, and tell stories about this. I will go back to being okay about making my own decisions about how to try and treat my diseases, and stop hoping that someone else will tell me how to handle it.

Perhaps I will post this rant on my blog, or perhaps I won't because I will decide that it's all a bit overdramatic. Either way, writing it has helped me come to an internal-narrator conclusion worthy of Scrubs or Grey's. Maybe reading it would help someone else know that it's okay to not be positive 100% of the time. And that would be another conclusion in itself. For now I will sleep, and all going to plan I will wake tomorrow with the kind of hope that is good for me. The hope that tomorrow will be a happy day, and that I will have a good life. Illness or not.

Thanks for reading,

Little Miss Autoimmune.  

Arthritis New Zealand Christmas Appeal

A few months ago, I was interviewed by Arthritis New Zealand, as part of their Christmas appeal. Last week, they contacted me to say the appeal had raised nearly $40,000 in donations! They also included a copy of the story about me, that went out with the appeal. It's always a little weird to read about yourself, when it's been written by someone else, especially when it comes with photos, but I've posted a scan of the appeal letter below.  

 
Thank you to everyone who donated, and a big thank you as well to those of you who sent messages of support. Arthritis New Zealand sent me some of the ones addressed to me, which I've included below.

 

 


Thanks for reading

Little Miss Autoimmune

Choices (Part Two) - Life Isn't Fair

“Rather than embrace the immutable and humanizing fact that we are all dying at all times, we point the finger of scorn at those who die more quickly wondering how they have brought it upon themselves.” 

God is No Laughing Matter – Julia Cameron

I found this quote in the back of one of my notebooks the other day. I remember a few months ago reading it, and copying it down because it struck me as interesting, but even as I did I didn’t 100% agree with it. Yes, I have come across people who judge me for being ill. I have come across people who will make assumptions about why I am in the position I’m in now, or others who believe I could be fixed if I just... and the fact that I don’t want to, must mean I don’t want to be well.

For the majority of people, I don’t think the word “scorn” fits though. I think most comments of this nature come from a very genuine, if misguided, desire to help. Others, I think, come from the naïve human believe, which we all hold to some degree, that life should be “fair.” If someone gets sick because they smoke, do drugs, eat an unhealthy diet etc. then we can comment that it’s sad, but we can feel secure in the belief that it won’t happen to us because we take care of ourselves. We can feel confident that they did indeed bring it on themselves, and we aren’t going to make that same mistake.

One of the most common questions I get asked is whether I have tried a gluten-free diet. When I say I’ve been gluten-free because of coeliacs for over ten years, the response is often one of sadness. I think people sometimes hold on to the idea that you can cure everything with something like a gluten-free diet like a talisman, fighting off the illnesses they either have now or want to avoid in future. But unfortunately this isn’t always the case.

The reality is sometimes people who take the best care of themselves get very, very sick. Sometimes people who have terrible lifestyle habits enjoy a disgustingly unfair level of good health. Some people have immediate success with either conventional, or alternative treatments, and others of us have to struggle to find anything that will make even the slightest bit of difference. Because life isn’t fair, and that’s just the way it is.

I felt this tied into my first post about the choices people with chronic illness face, because as I wrote I was trying to pin down why it is that everyone seems to have an opinion on which options you should take when it comes to treatment. I was also trying to pin down why it is that I, and many others, get defensive when others make suggestions about what we “should” be doing.

In many cases, I think making suggestions probably comes down to wanting to share the happy. If something is working, won’t everyone want to try it? But the reality is whatever it is that’s working for you or someone you know; it may not work for everyone else. Other people may have already tried it, it may just not be right for them, or it just may not be a priority right now. When I dismiss something another patient suggests, it doesn’t mean I don’t believe it worked for them, just that it either hasn’t worked for me already, or there’s a very good reason I can’t or don’t want to try it.

So why is it that I get defensive?

I don’t mind people making suggestions, but I do mind if people push them or indicate that I’m being unreasonable not to try them. For example, I’m sure cider vinegar does have many healing properties but, given that I’m allergic to apples, I don’t have any interest whatsoever in trying it. I don’t expect people to know I’m allergic to apples, so I don’t object to the suggestion, but I do get irritated if people push it once I’ve told them it’s not an option for me. The allergy isn’t going to go away if you keep regaling me with the benefits of apples. Even if there isn’t a reason, and someone just doesn’t want to try whatever it is you’re pushing, I’m not convinced nagging is the best way to change that. If it’s something that you believe in, then by all means suggest it – but ONCE is enough.

It does also bother me when suggestions are given with an air of authority or with the implication that the suggester is an expert in the subject. Unless you really are an expert in both the thing you are suggesting AND the disease(s) you are proposing to treat you could be doing more harm than good. I can’t tell you how many times someone has suggested something that would actually do more harm than good for me. Not necessarily because the thing itself is harmful in general but because it is harmful for my particular illnesses. I can’t say this enough times: Just because something is natural does not automatically make it safe. I am old enough and wise enough to do my own research, and make informed choices, but I look back at teenage-recently-diagnosed-me, and realise that I wasn’t always. If you’ve heard about something you think could help, but you don’t know all the facts, just admit that. I’m far more likely to trust someone who says: “I don’t know much about it, but would this be helpful for you?” than to someone who insists they know exactly what I need, despite evidence to the contrary. 

The other thing I find hard to deal with is when suggests have an element of blame attached to them. A series of posts circulated on facebook recently depicting images of fruits and vegetables, against images of medications with captions like “when are we going to understand this is the cure (the produce) and this is just a band aid (the medication)?” or others suggesting that medications are the cause of all illness, and we’d all be cured if we just treated everything with honey.

I do strongly belief in the positive effect diet can have on illness, and I think alternative therapies can be very beneficial, but neither are a cure. I have always had a good diet, including my 5+ a day, but I still have health problems. I’m not sick because I didn’t eat enough fruit and vegetables as a child, nor can all my problems be blamed on medication. Suggesting anyone brought their illness on themselves by diet or any other means will most likely come across as condescending and, as the quote suggests, like scorn whether that is your intention or not. 

If you haven’t had first hand experience of chronic illness in your own family, it can be easy to believe that you go to the doctor or alternative medicine practitioner, they tell you what’s wrong, they treat you and you get better. It is hard to fathom that sometimes there isn’t a simple answer. It’s also hard to understand that just because something is natural, that doesn’t automatically mean it’s safe or beneficial.  

I think basically it comes down to, the suggestions aren’t the problem, but sometimes the way suggestions are made can be offensive. My advice to people would be to think about how you would feel when confronted by what someone else think you “should” be doing. Take a moment to listen and to ask some questions before jumping in with what you think the solution is. Posing your suggestion as a question can help too. Rather than “You should...” think about “Would _______ help?” or “Have you ever heard of _________?” 

And most of all, remember that it’s not always as simple as cause and effect with chronic illness. So leave the blame behind, at least until you have all the facts.

Thanks for reading, 

Little Miss Autoimmune

Choices (Part One)

When you have a chronic illness you face a lot of choices. For treatment, do you go with a mainstream medicine, restrictive diet, or an alternative therapies path? Within each of those options, there are a whole host of further choices to make. Which medicine? Which diet? Which alternative therapy? Then there’s the question of how long you give each option to work, before moving on to another. Each option has many pros and cons. If you choose medication, you may be facing some pretty heavy-duty side-effects and long term risks, but a natural or alternative method does not automatically equal safe either. Many natural therapies and diets come with side effects and risks too. Then there’s the fact that whichever option you choose may not work, in which case permanent damage from the diseases is a risk. 

Any path you take, there will be someone who judges you for it, or who will make well-meaning suggestions that you should have taken another. I have irreparable damage to my body that shows I haven’t always made the right choices. Or perhaps another way of looking at it: I have irreparable damage in my body that shows that none of the available options have been successful for me. 

If you have more than one illness, the choices get even harder. Recently I had to choose whether to stay on, or go off a certain medication. Basically, the medication was making my systemic symptoms considerably worse, while at the same time keeping my joints stable. Going off it would hopefully mean the systemic symptoms would calm down, but the trade off was that my joints would more than likely begin to progress again. It was a tough choice, but in the end I chose to go off it, and I’m just hoping that it was the right one. I probably won’t ever be able to say for sure, but for the moment I feel okay about it.

Sometimes, I have to make choices about which symptom I can cope with being worse on any given day, because the things that help one disease will make another worse. Something as simple as clothing choice can mean choosing which type of sick I’m going to be. If I get too hot, my tremors get worse, but if I get even a little bit cold my hands and feet turn blue and I sometimes start to have difficulty breathing. If I have too much exposure to sunlight it means rashes and generalised flares, but long sleeves in summer means overheating and lack of sunlight means vitamin D deficiency.

In terms of diet, I have tried many things, and each came with a list of benefits and trade offs. Going vegetarian helped my joints and inflammation levels, but my anaemia, stomach problems and PCOS got worse, and I developed migraines. Going grain-free helped my stomach problems, but my joints got worse, my inflammation levels shot up, and my bladder problems increased. Basically it comes down to cutting out any one food group, means eating more of another, and that can come with downsides for some people. I often joke that I am just allergic to food in general, as there are very few things I can eat a lot of without getting some ill effect. So while there are many cases of these diets being successful for other people, they are not right for me.

I often hear people preface their success story with “if it works for me, it can work for anybody,” or a statement of similar meaning. This never seems to be based on anything in particular - just a strong belief that theirs is the right path. The fact is, just as not every medication works for every person, not every diet or alternative therapy will work for everyone either. If your path is working for you, that is fantastic. Keep doing what you are doing. But if you want to recommend it someone else, maybe try prefacing it with something like: “this worked for me, maybe it might work for you too?” because this is a much more realistic assessment of the situation.

Overall, my choice is a combination of methods. There are a number of food groups which I limit to avoid flares of particular symptoms, though the only thing I have completely cut out is gluten. I am on some medications, and I haven’t ruled out adding more to the mix, but there are some that I have stopped due to the side-effects well outweighing the benefits. I take some natural supplements with the support, and encouragement of my doctor, and although there are some alternative therapies that I will never try again because of bad experiences, there are others that I’m willing to give a go. I’m a big believer in the power of positive thinking, and if it’s possible to cure yourself with either laughing or cathartic crying, I sure do enough of both to give it a decent shot.

All of these things combined help to keep me feeling okay-ish, but they’re not a cure. For me, it is a balancing act, and quite a precarious one at that. Perhaps I would have success if I chose one path or the other, and committed to it fully, or perhaps the whole balancing act would tumble down and I’d be left sicker. Either way, I’ve resolved to be okay with whatever choices I make whatever the outcomes turn out to be. I’ve also resolved to be okay with the fact that whatever I choose to do, there will be someone who thinks it’s the wrong thing, or who thinks their method is better.

Until I find someone who can successfully cure diseases with chocolate, I’m probably never going to agree that one method is better than another. Instead, I tend to fall back on my favourite place to get advice, The Sunscreen Song:

“What ever you do, don’t congratulate yourself too much or berate yourself either – your choices are half chance. So are everybody else’s.” 
Advice, like youth, probably just wasted on the young – Mary Schmich (featured in Everybody’s Free (To Wear Sunscreen)) 

Part two coming soon... 
Thanks for reading, 

Little Miss Autoimmune