I have a friend with an autoimmune disease, and I need your help.

I have a friend with an autoimmune disease. For anyone unfamiliar with how autoimmune diseases work and why having one sucks, it’s basically when all your white blood cells and other bits and pieces of your immune system are over-enthusiastic action-movie heroes who think ‘destroy everything’ is a mandatory step in the process of saving the day.autoimmune1Imagine being the city at the end of an Avengers movie. That’s how my friend feels most of the time. Unsurprisingly, she also gets lots of viruses and infections. autoimmune2She frequently comes down with tonsillitis. To stop this happening, she just had her tonsils removed. The procedure went about as well as these things do.

autoimmune3And she was fine until her immune system decided to save her from the painkillers.

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She was so unwell and in so much pain that she had to go back to hospital. This was not unusual for her. She has been to hospital 5 times in the last 6 months. She sees her GP about as often as she sees her mum, more often than she sees me.

I know what you’re thinking. You’re thinking: these medical comics are no Awkward Yeti and this is kind of a bummer story.

You’re right. I’m no Awkward Yeti and this is kind of a bummer story. And it’s about to get worse.

That statistic on how many times she has been to hospital in the last 12 months? I had to ask her for it when I sat down to write this because I didn’t know it. Even though I consider her one of my closest friends, she doesn’t always tell me when she ends up in hospital. She only told me this time because on that particular day I happened to message her to check up on her recovery. And in that message she apologised profusely for having to tell me bad news.

That’s why she doesn’t tell people. She doesn’t want to be a downer. She doesn’t want to force a nasty reality about life and illness on other people. She is afraid that if people get bad news every time they talk to her, they will stop.

Hearing this broke my heart a little bit.

It can be difficult to talk to people about chronic illness. It feels socially unsafe to bring up in conversation, and even the people who care don’t always want to hear about it. Perhaps because they want you to be happy and healthy and it hurts to know that you’re sick, so it’s easier for them to avoid all reminders.

With my collection of medical conditions (depression, assorted anxiety disorders, chronic fatigue syndrome, fibromyalgia) I get it. Or maybe I should say I kind of get it. Although I feel that social pressure to shut up, sit down and not rock the boat, I’ve never been very good at submitting to it.

Whenever someone dismisses my anxiety and tells me I’m just being ridiculous, I smile and get through the conversation. And then I draw a comic that touches on anxiety and publish it here.

When someone says that because I have depression I must make up stories for attention (true story … or is it?), I smile and get through the conversation. And later when I find other people who are drowning in emptiness I listen to them and then talk to them about what depression is and isn’t.

Every time someone shuts down discussion when I mention my chronic fatigue syndrome or completely ignores the effect it has had on my life, I smile and get through the conversation. And then drop my chronic fatigue bomb into the next one too.

And I was happy doing that privately. I would have gone on with my tiny rebellions for years, maybe my whole life. But then one of my closest friends apologised for telling me she was so sick she had to go to hospital, and that changed things.

My rebellion is going public, and I’m recruiting.

autoimmune8

Please talk about illness.

I know it’s hard and maybe you don’t know how and it feels too awkward, but life is about doing hard things.

You can start small. Acknowledge it in conversation when it comes up rather than gliding past it. Think about how that person’s illness might impact your plans together and, if it would help, offer to make adjustments. Ask them how they are doing. Listen to them, and let them tell you the truth. Ask follow up questions. Let them make jokes about it. Let them scream about it. Say Voldemort, not You-Know-Who.

Unless you are a hermit (…with an internet connection who follows my site), I guarantee that among your circle of family, friends, colleagues and acquaintances there is somebody with this kind of illness. Autoimmune disease, thyroid conditions, endometriosis, anxiety disorders, polycystic ovary syndrome, chronic fatigue syndrome, severe back pain, lingering physical injuries, fibromyalgia, Parkinson’s, MS, depression—I have names associated with each one.

When my friends end up in hospital I don’t want them to feel they should hide it. I want them to feel safe enough to tell people when they are so unwell they cannot get out of bed, in so much pain they vomit, or falling apart because waking up to the same struggle each and every day is becoming too much to hold together.

This is a bummer story, and I do not apologise for it. Maybe it’s awful to hear a friend is going through all that, but it’s far worse not to hear.

Please talk about illness. Take away its power to isolate already vulnerable people. Help me make a world where my friends will always know they can say something. I can’t bear the thought of them facing it alone.

33 thoughts on “I have a friend with an autoimmune disease, and I need your help.

  1. So agree!! There are so many social cues that tell us not to talk about this, or that. Don’t be the downer. Don’t bring up illness, or shame or guilt or pain. I’m pretty optimistic about life, but I have bad days. I have had things happen that have made me want to eat way too much ice cream or smoke too many cigarettes but we all have it happen. Maybe not the ice cream, cigarettes or overindulgent part but the pain part. Actually, I have never even admitted the smoking part to a stranger due to my own shame. If you haven’t already read “Furiously Happy” I think you would thoroughly appreciate it. It’s all about depression and fully engaging the upswings :) Sending gratitude.

    1. I have read ‘Furiously Happy’! It’s excellent. I also recommend it to other people whenever the opportunity presents itself and sometimes when it doesn’t.

      I’m very pro-talking-about-things. That social pressure to ignore or be silent about something that really, really gets to me. Because you’re right, we all have stuff happen and we all have things we need to be able to talk about.

  2. I wish I could “like” this post multiple times, for many different reasons, but, since I can’t, I’m just gonna share it around. Thank-you for writing and posting this!

  3. I hope you don’t mind me venturing another perspective (too late!)! I am guilty of the avoidance you describe too – but not because I don’t want to talk about it or because I feel awkward. I always imagine that the friend or family member must be tired of talking about their condition and that initiating conversation about it is almost ghoulish. Perhaps I am projecting how I think I’d feel rather than asking them. Your post challenged my preconceptions – thank you! I love the drawings too!

    1. I’m glad you liked the drawings and that your preconceptions were challenged.

      There are times when people don’t want to talk about their illness. I know that I have those times myself, but I still appreciate when people check in with me. I can always say that I really just need a distraction from it right now. I think the important thing is for people to feel free to talk about it, even if they don’t want to take advantage of that freedom all the time (and this is not the current reality for most people).

      There are certainly ghoulish ways to ask, but plenty of non-ghoulish ways too. Even just “how are you doing?”, or “how are you feeling today?”, or “has [your illness] been causing you much trouble lately?” are fine and they leave the level of detail entirely up to the person being asked.

  4. berleave it or else, i do think about … stuff like that. frequently. in part ’cause “Betty” and i are scared of nursing homes, etc. i don’t think ANYBODY is not without either knowing someone seriously ill — or that has happened to them. scarier yet: “it” is never very far away!

  5. What saddens me most is that there ARE people who use these illnesses for attention and leverage. People who open every conversation with, “GUESS HOW SICK I AM TODAY? BETTER BE NICE TO ME!” and wield their illness as a challenge, a weapon to gain back the upper hand in a situation that otherwise makes them feel powerless. And in doing so, they make the rest of us reluctant to ever bring these things up because we don’t want to be “that guy”, even if we desperately need a listening ear.

    There’s a That Guy in my office. He’s the reason I haven’t told anyone except my boss that I have a thyroid condition, or that my body can’t remember how to store iron anymore. Everyone else just assumes I get the flu a lot, and I don’t correct them because I never want to see them looking back at me with the look they give That Guy when he’s waving his latest test results in front of their face (no joke, he actually prints them out at work and goes around the entire building showing everyone) and recounting the grisly details of his latest hospital visit when they were just trying to ask him to order more toner.

    I’m not worried about being a downer; everyone’s gotta be sometimes, right? It’s the preexisting bias created by people like That Guy that I can’t stand. The assumption that just because someone’s revealed they have an illness that isn’t going away anytime soon, it’s all they’ll ever talk about from then on. But you’re right. We still need to talk about it, and we should.

  6. Sometimes there’s a fine line with how public you want to go with a thing… whether it’s a traditional disease caused by a germ or something or a mental illness for which there is no easily identifiable cause… but whenever you have something bothering you, it is important to have someone who will listen. They don’t have to fix anything or even help… just someone that you feel like for a few minutes at least you can let your guard down and be yourself and talk about what is going on… even if the thing itself can’t be fixed by conversation, just being able to unburden your brain and not feel like you are burdening someone else can be a powerful thing. Unfortunately, we don’t all have such a person in our lives… and that can make the otherwise unbearable really supremely unbearable in an indescribable way.

    1. Sometimes the best thing is just to have someone who will listen. It’s very difficult when we don’t have anyone like that in our lives.

      People definitely have different preferences on how public they want to make things–but I think it should be up to that person, not the taboos of the rest of the world, where that line is set.

    1. Thank you. That would certainly be good, and I think I’ll keep at it, but I suspect my site simply does not have the reach to generate something like that. I’ll count it as a win if it influences even one person to be more open about illness.

  7. Wish there was a button for Love instead of Like!!

    “When someone says that because I have depression I must make up stories for attention” Omg how terrible, wtf was that person thinking?? Also love the “(true story … or is it?)” following!!

    I heart this in so so so many ways! I have a lot of auto immune problems and definitely my life changed dramatically when they started getting bad. And when I started talking about them it felt so horrible- just feeling not believed or misunderstood, or just that people wanted to avoid me. And my problems are certainly not as bad as your friends- I feel so sad that she’s having to go through that. It’s a terrible terrible thing to have to feel sick all the time, but losing your ability to connect to people or feeling like you will be judged for your pain is so so awful.

    Thank you for posting this!! Love the images as well!!

    1. I’m glad you liked it and could relate a bit. I was a bit nervous about posting it, to be honest, but I’m really glad I did.

      And thank you for commenting on the images and the brackets joke! I was particularly happy with them.

  8. Thank you so much for posting this! Illness, no matter if it’s mental, physical emotional, spiritual – is common to so many people to varying degrees, yet it’s so difficult to open up and talk about it, for fear of being rejected, ignored or not being taken seriously.
    I think I’m coming to realise a bit about that myself – that people are more often much more understanding than you might think, and even if not, there are always people who’ve felt similarly and will try to ease the load on other people. Also that talking about one’s issues doesn’t necessarily place that negative situation onto others – what it’ll be more likely to do is allow the one you talk to to know you on a deeper level, which can only strengthen your relationships with others.
    It’s very reassuring for you to post this, and I totally agree with you. Silence isn’t effective.

    1. Thank you! I’m glad you got something out of the post. I think you’re right that there often are more understanding people than you expect. There are always non-understanding people, of course, but when you do stumble across a lovely person they tend to more than make up for it.

  9. Hey thanks for this refreshing post, because I have an autoimmune condition too and some people in my life, it seems, have a don’t ask-don’t tell policy toward it. It affects my e.v.e.r.y. day life! Thankfully I have a very supportive and encouraging spouse. Hope your friend can find her path to healing. Has she heard of the Autoimmune Protocol? Cheers, Jessica

    1. I’m glad you liked the post! I’m glad that at least your spouse is supportive. It’s important to have at least someone who it. I hadn’t heard of the Autoimmune Protocol, but Google says it’s a diet to determine food allergies?

      1. The AIP is for anyone with an autoimmune disease–MS, RA, Lupus, Hashimoto’s, etc…–who would like to use dietary/nutritional interventions to help ease symptoms. It has 2 phases, the first one being an elimination diet for 30-90 days. The second phase is, yes, to determine which foods contribute to your symptoms by following a specific reintroduction plan. You can read about my journey with weaning onto the AIP at my blog: http://www.smallkitchenbiglove.com. And there are some great resources too! http://www.autoimmune-paleo.com is one. All the best, Jessica

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