Living with an Invisible Illness (or three)

Lifestyle

This post has taken me a long time to get round to writing. Believe it or not, I set up the title as a draft blog post back in June last year. I’ve opened it up so many times to begin writing and I just haven’t been able to. I began to wonder why. What is it about writing about this subject that gives me total writers block? Well, I guess it could be a lot to do with the fact that I never like to seem like I’m moaning or being ungrateful. It could be that I definitely don’t want people to think of me differently. It could be that I’m not really sure what constitutes too much information and don’t want to be an over-sharer. Most likely, it’s a combination of all of the above. Either way, here I am, nearly a year later, finally biting the bullet and giving this little post a go.

So what made me want to write it now (and actually follow through)?

Two things:

  1. I just came out of hospital having had abdominal surgery (not the one I went in for – story of my life!) and my recovery is proving more challenging than I’d anticipated thanks to my pre-existing conditions.
  2. I saw this incredible post on Instagram by @allontheboard and was inspired by the openness of it:

Having read that, it seems like a good place to start. I was diagnosed with endometriosis back in 2007, when I was 19 years old. It has been all of the above and more for me and definitely the most painful of the three autoimmune conditions I have been diagnosed with (this is a good place to mention that the other two are Hashimoto’s Thyroiditis and Coeliac Disease – I’ll come back to them later). I have had two thermal laparoscopic ablations of the endometriosis (the second of which was most likely what helped us to fall pregnant with our daughter) and was recently told that I will have to have a third, in the not very distant future.

So what is it like to live with endometriosis? Painful. Very painful. At least two weeks of every month, sometimes more, the pain is crippling. It has been known to have me bent double and it doesn’t pass very quickly. Once I even ended up being sent an ambulance after calling NHS 111 in so much pain, only to find out that it was ‘just’ the endometriosis. The trouble with a condition like this, is that you can’t really tell people what’s going on or how much pain you’re in. I personally feel that I don’t want unnecessary attention that surrounds being ‘poorly’, while also feeling that so many people out there have so much worse to contend with and that I shouldn’t be selfish with how I feel. When I get my period, it often knocks me flat for 2/3 days. And I mean literally knocks me flat. I struggle to get out of bed, I struggle to do normal tasks, let alone work a physically demanding job (albeit now part time) and look after an overexcitable and very active toddler. The tiredness and exhaustion is untenable and it’s practically impossible to explain it without sounding like I’m moaning about a heavy period. The trouble with autoimmune conditions, is that once my immune system takes a hit, it doesn’t just take the hit in the place it was targeted, it seems to take on a whole body response and can easily lead to me feeling like I’ve got the flu; full body aches and pains, headache, sore throat, insane levels of fatigue. Yet try explaining that every single month, in order for people to understand. I get bored of it myself, let alone how it must sound to others. So, I don’t. I crack on, do what I can, take it easy on myself at the times when I feel worst and learn to make up for it at other times.

I find that the hardest thing is comparing myself to others. I see my friends running busy lives, being on their feet all the time, working crazy jobs and bringing up their families as well as fitting in all their social engagements and more, and I know that I just can’t physically do it. My body literally doesn’t allow me to. And that’s really tough. Because my mind runs at 100mph and there are so many things I want to do, I just physically can’t do all the things I want to. In fact, at the end of last year it got to the point where I had to make the decision to almost entirely close the business that I had spent a decade (the whole of my twenties) building, because I simply didn’t have the energy and level of health required to continue running it. I don’t really ever say it, but that really sucked. I wish I could have kept all the plates spinning and still felt on top of my game, but my body keeps reminding me that for some reason it isn’t like that for me. And that paragraph is exactly why I don’t talk about it, because it sounds so self-centred and needy! Which is not how I ever want to come across. Eesh, I’m remembering why I keep closing this post before I start writing it!

Ok, next! Coeliac Disease. This is a really weird one because all it means really is that I can’t eat gluten and there are much worse things really, aren’t there. That said, it took until I was 24 for this to be diagnosed, in which time a fair amount of damage had been done to my intestine. The good thing is that once you stop eating gluten (if you have coeliac disease), you start healing, so the long term damages that can occur (such as osteoporosis) are much less likely. The thing that no-one really wants to admit out loud, however, is that not eating gluten, ever, is really really pants! Every single menu has to be scrutinised when you eat out, at weddings you get the most random foods so that the kitchen don’t take any risks on cross-contamination (tinned fruit salad, anyone?), if you want to grab food on the go it isn’t always possible, sandwiches with gluten free bread just don’t taste the same and don’t even start me on the amount of coffee shops where you can’t get a cake! Now, I know that this all sounds very petty, but if you want to know what it’s like, I challenge you to go totally gluten free (no traces, no sneaky little biscuits, no oats, the list goes on) for a week or two. It’s just so frustrating! You can’t ever just be the same as everyone else and the perfect example of this is when we went to Disneyland a few years back. Literally the only thing I ate was boiled rice and salad. That is not cool. I’m a big girl and I can handle it, it gets me down from time to time, but largely it really doesn’t matter in the scheme of things. That said, imagine what it must be like for a child to live with Coeliac Disease. Not really understanding why they’re different from their friends, why their parents send lunches to school and separate cakes or treats to play dates and birthday parties and why they can’t just order off a ‘normal’ menu. As I said, it’s pretty pants. Not awful, not life changing or life threatening, but a total pain and a lifelong thing to put up with.

Talking of lifelong, all of the conditions I’m talking about today are what’s considered to be ‘chronic’. That means that there’s no cure, there’s just management. The other major drawback is that they are really underestimated, misunderstood and mistreated. The GP doesn’t often think about them as having an impact on my life, although often the reason I end up at the GP is due to a response that’s happened thanks to one of the conditions. I’m lucky enough to have private healthcare thanks to my husbands work, but the major drawback is that it doesn’t cover chronic conditions. This means that any time I have a problem relating to them, in any capacity, it isn’t covered. No operations, no consultations, no diagnostic testing, ever. And this seems grossly unfair to me. Not because, as you might assume, I don’t want to use the NHS, quite the opposite. The NHS saved my life in 2016 and I think that many (if not most) of the best doctors work within the NHS and have no private practice at all. The reason is that part of the benefit of the UK’s private healthcare schemes is that it alleviates pressure from the already overstretched NHS. We know what the problems are with me, medically. Instead of taking up a large number of appointments, testings and a hospital bed to have something sorted out that is ongoing for me privately, I have to use all those resources on the NHS, because BUPA won’t cover me. Pre-existing conditions get refreshed every 2 years , but chronic conditions are exempt forever. How silly and frustrating is that.

I’m now at risk of writing an insanely long post that waffles and rambles and becomes entirely uninteresting. So, to finish off, I’ll say that there isn’t really anything interesting to share about the third condition, apart from that it totally messes up my thyroid, resulting in me being on a thyroid medication for life and struggling with a lot of fatigue and more flu-like symptoms. There was a 2 year period when the doctors thought I had Lupus (another chronic autoimmune condition) and this was due to having borderline results on all the relevant blood tests, as well as being symptomatic, however the diagnosis was removed after no change was notice over a two year period.

To summarise, living with an invisible illness is tough. You don’t want to moan, but equally it can make you feel totally horrendous. That not only has an impact on your physical health, but also your mental health. It can be quite demoralising and can bring you down a bit if you let it. In fact, it takes an awful lot of strength to not only fight through the tough physical times, but to have the positivity and determination to crack on again where you left off and continue living as much of a healthy life as you can. People often say ‘you look so well’, which is great to hear, but sometimes that is solely down to having a full face of makeup! In fact, just three weeks ago when I went for the consultation which ended up resulting in a pretty big abdominal surgery and being signed off work for six weeks, the consultant actually began by saying ‘well you’re a fit and healthy young lady with nothing else we need to be aware of’, only half phrased as a question due to the assumption of what the answer was going to be. When I explained to him about these three conditions, plus the 11 surgeries I’ve had in the last 12 years, he couldn’t quite believe it.

Invisible doesn’t mean it isn’t there, it just means you can’t see it, and funnily enough that sometimes makes it all the harder to handle.

2 thoughts on “Living with an Invisible Illness (or three)

  1. Sounds exhausting, sorry to hear things are not improving, I really hope the recent op ultimately helps once you are over the recovery? Thinking of you . Lots of love xx

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    1. Thank you so much. Unfortunately the op was entirely unrelated and was just to solve a separate problem (which it appears to have done ☺️). I’m using my time off to start looking into some alternative therapies and ways of making improvements. Hope you’re all well xx

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