A chronic disease letter to friends, family & colleagues...
As I’ve talked about before, I suffer from endometriosis.
Recently I’ve been having what I thought was a series of horrendous flare-ups. Turns out it looks like it’s a whole other joyous issue but either way I have been feeling like balls. Big, painful, stabby in the abdominal, fainty, exhausted to my very bones, balls.
As such I’ve spent a lot of time trawling communities and the internet for answers – which as anyone with a chronic disease (or anyone who’s ever Googled any medical problem ever) knows can be both a blessing and a terrible, terrible curse. There is nothing more terrifying than coming across stories of people who have to live their lives in pain erryydaay without respite or have irreversible life changing operations (like hysterectomies or colostomies) in their twenties and thirties in a desperate attempt to rid themselves of said pain.
A common theme which seems to pop up over and over again in all these communities, and from conversations I’ve had with people who suffer from other chronic diseases (I’ve got two friends who suffers from colitis and other from a protein intolerance – both of which are shite in equal measure) is that people struggle to explain what’s going on to people who don’t have first-hand experience themselves. And of course this feeds into the miserable experience even further.
So I wanted to draft a list for others who suffer from a chronic disease to share with their friends, family and colleagues to help them understand what we’re going through and how to better help.
Please read and share as you feel appropriate…
- It’s taken me a long time to find out what’s wrong with me – The average woman with endometriosis takes 7.5 years of agonising pain before doctors finally take her seriously enough to realise it is just that. For colitis suffers, it's a mere three years, ha! That’s a long time of feeling ill without knowing why, constant poking, prodding, tests, scans, “just see if it settles down in the next few months”, hospital waiting lists and tears. And it’s been a very frustrating, exhausting and scary ride.
- I am never going to be totally better - The problem with chronic disease is it doesn’t ever get fixed – just so you know, the dictionary definition of chronic is persisting for a long time or constantly recurring. There’s no cure. There are only coping strategies and attempts to minimise symptoms. Sometimes I’ll have flare-ups (often without warning) and sometimes things will be managed well (praise the lord!).
- I am going to cancel a lot of plans - I am sorry, please don’t take it personally. When a flare up strikes, it can be so bad that I’m physically incapable of leaving my house…or even my bed. It’ll mean dropping out of music gigs we booked tickets for six months ago, cancelling holidays at the last minute, only coming to half of your hen do and trying to reschedule dinner three times before I feel well enough to meet up. Please don’t be mad at me. I know it’s a pain but I guarantee it’s more of a pain and expense for me. I’m gutted I can’t come.
- I will have seriously weird dietary requirements – Chronic diseases tend to come along with a weakened immune system, or even specific diet problems if you have something like coeliac disease, which means your body starts destroying itself if you eat anything with gluten on it. So I’m going to have to try and become one of those health nuts which have become so fashionable recently. I’ll give up drinking, caffeine, refined sugar, meat, dairy and gluten – with mixed results – because they’ve all been proven to crush the immune systems and make my diseases flare ups worse. Soz. But as boring and annoying as it is for you, it is significantly less fun for me. Spending 20 minutes trawling through a restaurant menu to select the one dish which won’t leave you in agony for a week gets rather tiring.
- I won’t always look sick – Most of the time, if things are going well – I’ll feel, look and act pretty normal. But as mentioned before, this doesn’t mean I am better. I’m just going through a good patch. And sometime I’ll still be in pain. I’m just trying to plough through and carry on regardless, because I refuse to let this disease stop me living my life.
- I’ll have phases of being really depressed – Because being chronically ill sucks dick. Especially when you are doing everything within your power to be well. Losing control of your own health indefinitely is incredibly frustrating and scary. It can dramatically affect the way your life your life and that is miserable. When I’m having a flare-up, I’ll be feeling down. Really down. Like seriously down.
- It often takes ages to see a doctor, but that doesn’t mean it isn’t serious – Because chronic disease doesn’t instantly kill you, in the UK the NHS waiting lists are fricking enormous. Thanks to the lack of money & Jeremy Hunt, I’ll probably have to jump through several hoops before I can even see someone who really knows what they are talking about. And if I get medical insurance after I've already been diagnosed then they won't cover the costs. Depending on the diseases it can take a week to see a GP, who then with some convincing (depending upon your history & their knowledge of your history & their ability to be empathetic) refers me a community healthcare team. It takes on average a month to see these generalists (who often don’t have any useful advice). I’ll then have to convince them that my symptoms have been persistent & bad enough to warrant being referred up the chain again. Great, I’m on the list to see someone who actually specialises in my chronic disease! It then takes 3 more painful weeks to receive a letter with my actual appointment date. Which in this particular case is a month later down the line. I’ll sigh with relief as last time it was three.
- Lots of people don’t understand – Or they just flat out don’t believe you. People will tell me “Oh just get over it”, “You can walk, you can take yourself to hospital”, “Aren’t you better yet?”, “I’m annoyed your cancelling, what am I supposed to do?” And it feels like a kick in the stomach when you already feel like you’ve been run over by a truck. (NB some people are amazingly wonderful though!)
- I’ll need your patience, love and support – I hope you understand why having read all of the above. I want to be that fun, loving, energetic person I used to be all the time. I want to be a great friend, I want to be a great partner, sister, daughter and colleague…but sometimes this disease will get in the way of that and I am sorry.
- Talking about can be hard and complicated – and this is why I am sharing this list with you.