Why Living with a Rare Illness is Hard.

Living with any Chronic Illness is hard. Especially for those who have more than one. Living with a rare illness is more challenging. Mine is Secondary Adrenal Insufficiency. There’s an internet Meme which says ‘where the f*** is my adrenal gland anyway?!’. Until 18 months ago, I didn’t know either.

The actual illness itself might not be as limiting as other chronic illnesses. There are definitely people who are sicker than me who have really well-known and recognised illnesses. This isn’t about symptoms, it’s about what I personally find difficult about having a rare illness.

  1. You can’t just Google it. If you Google ‘Secondary Adrenal Insufficiency’ you mostly get medical articles, which are really hard to understand, articles about Addison’s, which isn’t quite the same thing, or articles about Adrenal Fatigue. Adrenal Fatigue itself isn’t life threatening, Adrenal Insufficiency is. Big difference. If you Google a well known illness or a surgical procedure, you get step by step information, support groups, blog posts, charities, awareness campaigns, Facebook pages…etc The worst thing for me was I didn’t know if new symptoms were ‘normal’ for my illness or if they were something I should be telling a Doctor about. I went to my Doctor, she didn’t know so she Googled it too and didn’t understand either.
    2) You start to question Doctors. Once you’ve seen your GP open Google and look baffled, or she’s asked you to read a test report yourself ‘to double check’ her diagnosis, it makes you start to question them. Doctors don’t know everything (or anything) about your illness. Most people can trust their Doctor when they say ‘your blood results are fine’. I now have to follow this with ‘what were the exact numbers please?’. The endocrine system is so complex that individual tests might come back as ‘fine’, but combined they can be an indication of other issues. So if my GP doesn’t know for sure, this leads me to hours on Google reading medical articles so that I can make sure my Doctor doesn’t accidentally kill me. (NB I like my current GP, she’s really good at working with me).
    3) Everyone has an opinion as to what will ‘cure’ you. This is a common irritant amongst people with chronic illnesses anyway, but no-one knows anyone with my illness so they try to compare it to something they do know. Or they decide that if they haven’t heard of it and you can’t see it, it can’t actually be that bad and I’m just a drama queen. The worst conversation I had was with a woman in a GPAU waiting room who had major heart problems requiring complex surgeries telling me that if I exercised more and pushed myself, I would feel better, because that’s what worked for her. I felt upset because she actually has chronic health issues herself and therefore must know how irritating it is to be given unasked for advice, but she’d decided that because her’s was heart related and she didn’t understand mine, she clearly knew best.
    4) You start to risk assess your daily life. I’m quite practical about living with AI, some people avoid going out at all for fear of dying. I figure that anyone could be in a car accident and die, even if it is more dangerous for me. But I do wear a medical alert and have an alert in my car and on my bag. I’m red flagged with the local ambulance service and hospitals. I know where the nearest hospital is. If I start feeling poorly quickly, I ask myself the question ‘how long have I got before I might pass out?’ when deciding on if I need an ambulance so I can explain what dose of IV HC I need or what my protocol is. And not all ambulances carry the life saving drug I need.
    5) It’s a guessing game. Literally. Asthmatics have Peak Flow Metres, Diabetics have Blood Glucose Metres to help them manage their conditions. I have to guess what my dose should be, there aren’t enough patients with AI to justify funding a metre. And then if I deteriorate more, I go to hospital and get them to run labs. But even then it’s just educated guessing- yes I might have a numerical value, but the only way of testing to see if the dose is adequate is by doing labs again once adjustments have been made. And it can all change in the space of an hour anyway. Clearly I can’t go to hospital every time I need to change my dose, so I have to ‘guess’. And guessing with an illness which can kill you if you get it wrong is great fun!
    6) I haven’t found anyone with the exact same illness/symptoms as me. I’ve been researching for 18 months. I’ve now found 2 Facebook Support Groups with people with similar conditions, but I’ve not found anyone with the same diagnosis, symptoms and medications as me yet. People should always be seen as individual patients regardless of their illness, but because of the nature of endocrine disorders, any slight variable can rapidly change the way it’s treated. It’s really isolating.

Photo: AI United (AIU)

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8 thoughts on “Why Living with a Rare Illness is Hard.

  1. Jennifer says:

    Hello!
    I didn’t realize you had SAI. Not that I know many people with Addison’s, but all have primary not secondary. I too have SAI. Nice to read your blog and connect.

    Liked by 1 person

  2. Lindsay frost says:

    i agree with everything you said was diagnosed SAI November 2014 after being ill for nearly 18 months told it was my age, family etc. Also ism an asthmatic and now suffer high blood pressure and migraines as a side effect of steroids. In the beginning felt so alone but have a supportive family. It’s hard recognising if you are ill due to low levels or other infections. I know there a lots of people suffering more but this effects everyday, the plans we had made and life with my children. Keep strong.

    Liked by 1 person

  3. Maria Stewart says:

    Hello,
    I really enjoy your writing. I’d like to share your work on our site, the Adrenal Insufficiency Coalition. We’re the research division of a non profit, Adrenal Insufficiency United. I don’t see your name anywhere. Is it ok to share and if so, do you want your name credited or is the link to your work adequate?

    Looking forward to your reply,

    Maria

    Liked by 1 person

    • Ok Then, What's Next? says:

      Hi Maria,
      I follow the adrenal insufficiency coalition on Facebook along with AIU. Thanks for the lovely comment, it’s great you want to share my work- please feel free to share what you like. I don’t put my name on my blog for professional reasons, so a link to my blog is fine. I’ll PM you on Facebook as well so you can contact me that way if you find it easier.
      Many thanks

      Like

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