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

Can you push through?

I had one of those days today, where you relive and rehash arguments from years, and I mean literally YEARS ago. In this case, it wasn’t even really argument I was relieving, it was one of those “this person said something I really didn’t agree with, but I didn’t have an answer to coherently explain why I didn’t agree with them, so instead I said nothing and now five/six years later am still trying to come up with what I should have said” situations.

Basically this is what happened:

I was running a training about chronic pain, and part way through one of the attendees interrupted. He started talking about people who train in martial arts, and who push through the pain. If they can do it, why can those of us suffering from chronic pain, just “push through.” Aren’t we just being too soft on ourselves? Aren’t we just not trying hard enough?

I didn’t know what to say. I couldn’t think of a way to coherently explain the flaws in this argument, but fortunately as I struggled to come up with an answer, one of the other participants in the training (who also happened to be a good friend) came to my rescue and redirected the discussion.

Today, I finally figured out what I should have done.

Now, before I continue, I’d like you all to try something for me. Raise your arms above your head – right up so that they’re touching your ears, elbows straight. Now hold them there, while you keep reading.

This is an argument I’ve come across a few times. The idea that you can “push through” pain. Yes, in some situations this is true – martial arts or other sports training, getting a tattoo or piercing perhaps, getting yourself to safety after an accident, and I’m sure other situations that I can’t think of right now. The difference with all of these situations is that there is an end to them. In my younger, pre-sickness days I did play sports, and while I don’t have any tattoos I have had a few piercings done. Yes, you can hold it together even if it’s hurting when you’re training, but you can be damn sure that as the pain starts to get to you, you’ll be watching the clock waiting for it to be over. Not only have I had piercings myself, but I’ve watched other get theirs, and I’m fairly sure the phrase most often said by piercers is “almost done” indicating that people are holding on for the moment that it’s over.

How are your arms feeling? Have your shoulders dropped down a little? Are your elbows bending a little? If they are, get them back up there! I didn’t say you could drop them! Could you keep them up there for another five minutes? How about another hour? How about THE REST OF YOUR LIFE?!

Maybe you could keep them up there for an hour, but in that last five minutes you’d be watching the clock, and as soon as that hour was up you’d drop them with a big sigh of relief and satisfaction. Maybe you could keep them up there for a day, if you got to take breaks and stretch occasionally.

Unfortunately, you don’t get to take breaks from chronic pain. There’s no end point in sight either. People with chronic pain do “push through” everyday, but it’s a different type of pushing through. We have to push to get out of bed, feed ourselves, and all those other daily tasks that healthy able-bodied people can take for granted. As an able-bodied person, you can’t decide what is or isn’t possible for someone living with chronic illness. If someone tells you they can’t do something, there’s no point telling them they should push themselves, because most likely they already are.

If you haven’t already, you can drop your arms now. Feels good? Don’t take that feeling for granted.

Thanks for reading

Little Miss Autoimmune

What not to say

This is a blog post I’ve been wanting to write for a while but I’ve kept delaying. I’m currently procrastinating doing a number of other things, so thought now might be a good time.

You may have seen some of the “what not to say” posts. These crop up from time to time on different sites: “10 things not to say to someone with RA,” “Things not to say to someone with IBS” etc.

 
There’s one thing I’d really like to tell people not to say. Well, actually two things, but they’re similar.

1) I have a high pain threshold

2) Well, I never get sick

Now before anyone gets offended, I don’t mean if you’re talking about yourself. It’s absolutely fine with me if, while you’re telling a story about your broken leg, or the time your liver exploded, or some other painful situation, you feel the need to concluded with: “but I coped fine, because I have a high pain threshold.” Sure. If your liver exploded then feel free to tell me about your high pain threshold – I have no problem with this. Except... I would have a little bit of trouble believing that you were still alive post liver-explosion, so I would probably have to conclude you were lying.

My issue, is when “I have a high pain threshold” is considered an appropriate response to “I have autoimmune arthritis” or “I have a chronic pain condition.” Especially when it is said with the air of this being an achievement. A high pain threshold is NOT something you have achieved any more than having a head is an achievement. It’s just something that is.

To be fair, it’s usually preceded by “Oh, well I’m lucky, I have a high pain threshold.” Even so, this is not an appropriate response at this time.To me, this comment is equivalent to if you met someone who was an amputee and said “Well, I’m lucky, I have two legs.” It is not relevant. It is not helpful and it’s insensitive.

My issue with the second comment is similar. If you are just for some reason bragging about your lack of sickness, that’s fine. Perhaps you are recounting the time you were exposed to Small Pox, Ebola and Measles all in one day, and yet still didn’t get sick? In this case, by all means tell me about how you’re lucky to never get sick. If I have just told you about how I had to take time off work because of______ illness, perhaps not the best time to tell me about your perfect health.

Again, with this one I object to it being touted as an achievement. If you eat well, exercise regularly, meditate and don’t smoke, drink or do drugs – then you may consider being healthy an achievement. Unfortunately, I most often hear this comment from smokers who I know have bad eating habits, and don’t exercise regularly. I’m sorry, but the minute those words come out of your mouth Schadenfreude takes over and I want you to get a cold* because you’re getting all high and mighty over being well when you’ve done nothing to deserve it.

*I only want you to get a cold though – nothing more serious because I’m not a horrible person, I promise.

The other thing I object to with “I never get sick” is it is often expressed as if it is a piece of advice. As in “Oh, you had to take time off work because you were sick? Well, you see what I do is I just don’t get sick – revolutionary, I know.” 

Again, you are lucky to not get sick. And by the very nature of luck, it is uncontrollable.

I don’t say any of these things to people who make these comments. In fact, I usually say nothing at all – just take a deep breath and wait until the subject is changed. I’m writing about them here though, because if you’re reading this, I hope you’ll stop and think before you respond either of these things.

 
People who have chronic pain don’t have a problem with it because they have low pain thresholds – they’re just in a tremendous amount of pain. Before I was diagnosed with Psoriatic Arthritis I was told by medical professionals that I have a high pain threshold – it doesn’t make a difference. I’m still in a sh**load of pain now.

People who have autoimmune disorders are often on immunosuppressant drugs. Their immune systems are squashed down, making them susceptible to every bug and germ out there. They have to work hard just to not get sick often.

 
I think sometimes people say these things, because they don’t know what to say. It’s hard to know what to say when someone is sick, particularly when they are always sick. My feeling is, if you don’t know what to say, think about what you want to convey to that person. Do you want them to feel heard? Do you want to let them know you are there for them? When you know that, I think the words will probably come and my guess is, they won’t mention pain thresholds.

Thanks for reading

Little Miss Autoimmune.