Happy Rare Disease Day, everyone! Today is the day when thousands of people across the country (and around the world) are trying to raise awareness for their rare (and often invisible) illnesses. The theme this year is improving care for people living through rare diseases, and there are some great events happening both on and offline, which are definitely worth checking out.
Living through your teens and your 20s can be a particularly difficult experience when you're chronically ill. There are so many things that you want to be able to do and experience, but your body simply won't cooperate. I know this only too well. My body and I have been in a constant struggle for supremacy for as long as I can remember. I have been living with Ehlers-Danlos Syndrome my whole life, and over the last eight months I have become significantly more unwell, developing Postural Orthostatic Tacychardia Syndrome and Mast Cell Activation Disorder (both related to my underlying connective tissue disorder). The sudden apparition of these two new illnesses really threw me for a loop. I could just about manage to get by with my EDS, but last year I became so sick that I couldn't get out bed, eat, sleep, read, text or even think straight. As a result, I'll admit, I spent a significant amount of time laying in bed (I couldn't really move anywhere so it's not like I'd be anywhere else) feeling sorry for myself (well, dangerously depressed), wondering what my life would be like if only I was healthy.
After being put on (and subsequently taken off) a ridiculous number of drugs, seeing more doctors than I can remember the names of, and getting more and more unwell, I decided to try and take my health into my own hands. After force-feeding myself the point where I thought I was going to die in December, in January I started doing a huge amount of research online. The only things that had been offered to me by my doctors were medications that made me either a) hallucinate, b) feel like my skin was burning off, c) a lovely mixture of the two. That's a lie. I was also offered some non-personalised advice from a dietician about an elimination diet that didn't take into consideration the fact that I was already on a self-imposed one anyway, and everything I was told to eat necessitated spending several days in bed recovering.
I started reading more and more about lifestyle and diet changes in relation to my illnesses, and realised that this is something only I can do. Not only have I adopted a vegan, gluten free, wheat free, low grain, low sugar, high salt, high-nutrient, anti-inflammatory, low histamine rotation diet with at least three freshly squeezed green juices a day (phew!), I've started working really hard on trying to meditate (something I never thought I'd be able to do), gently exercise, and find positives and ways to try and get on with my life in the best way I can right now. After all, that's all we can ever do, right? I'm happy to say that in just a couple of months, I'm now starting to see a real difference, and am able to get out of bed, tolerate more food, and work part-time from home. I'm still at the beginning of this journey, and have a really, really long way to go, but I have found that in addition to working on myself, having people around you that really understand and support you is so incredibly important. I've also become passionate about learning more about the role diet and lifestyle plays in facilitating healing in all kinds of conditions. Once you actually get into the literature and the personal stories, it's absolutely fascinating, and I would absolutely encourage everyone looking to heal to do the same.
When you have illnesses that mean you don't look sick, people generally disregard you and think that you're at least making some of it up. I have spent (and still do) a huge amount of time trying to justify myself to so many people. At the end of the day, this is counter-productive, and I'm seeing myself through the eyes of someone else's ignorance. I know what is happening to my body, and I also know what I'm capable of, and I'm doing everything I can to heal.
So, today, on Rare Disease Day, I'd like to take the opportunity to share some quick things that millennials (ugh) living through their teens and twenties with chronic illnesses will know. I hope that this will serve to help people be more understanding and aware of what they can do to support their friends and loved ones who fight every day for their health.
1) "But you don't look sick" is kind of the worst thing you'll hear all day
2) Sometimes the desire to feel 'normal' can be overwhelming
3) Learning to appreciate the small victories is a small victory in itself
4) Even though it comes from a place of love, overprotective friends and parents can leave you feeling like you're still 12 years old
5) Finding employers who understand that you might have to disappear for periods of time while you recover, and will do everything they can to support you, is one of the best feelings ever
6) Cutting out negative people from your life helps you heal
7) You know your body better than anyone, even your doctors
8) The internet is a godsend
9) Spoon theory makes total sense
10) The realisation that maybe all those doctors you see aren't actually helping as much as you thought is a frightening and enlightening experience all at the same time
11) Taking control of your life in the best way you can and trying to help yourself is always better than laying in bed feeling defeated
12) Self-sabotage, flair-ups and bad days are always going to happen, it's how you deal with them and move forward that counts
13) Finding positive role models who have been through what you're going through and can share their stories and tips really, really helps
14) You don't need reminding that you are not your illness, but sometimes changing ingrained thinking patterns is hard
15) You know what's really and truly important in life because you cut through the bullshit
16) You and your spoonie friends are some of the strongest people you know