This week is Invisible Illness Awareness Week, the following 30 questions are part of an initiative to raise the curtain on the lives and experiences of those living with invisible illnesses.
An invisible illness is a condition that severely impacts the patients life but is not visible to look at them, so they do not have any immediately visible symptoms that would allow you to identify them as a “sick” or “disabled” person. But it goes deeper than that. Many people who suffer from invisible illnesses also end up isolated and house-bound, they become invisible in their absence from society and they can start to feel invisible to those around them who do not notice their suffering.
1. The illness I live with is:
ME/CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: There were strange issues I was having like chronic fatigue, brain fog, IBS, boom/bust, difficulty concentrating, regular throat infections, from at the earliest 2006 which I later found out were symptoms of ME/CFS.
4. The biggest adjustment I’ve had to make is: My social life. I used to have a very busy social calendar and loved a party but I just can’t keep up these days. I really miss being part of a large social group and going out partying.
5. Most people assume: That I’m fine!
6. The hardest part about mornings are: The pain. I usually wake up with my feet feeling like they are bruised, especially on the soles, and join pains in all the funny little bones. As well as pains in my legs and back.
7. My favorite medical TV show is: I don’t watch TV! I got rid of my tele earlier this year. I found that with the sedentary lifestyle that is forced upon you with this condition I was spending far too much time watching total shite daytime TV. Now I prefer to read or do something gentle but productive.
8. A gadget I couldn’t live without is: My Nutribullet! Since getting sick I have become obsessed with nutrition and gut health, it is the only approach that has shown to have a meaningful and lasting effect on improving my symptoms. Having my Nutribullet means that on days when I feel too weak to prepare a meal I can throw some veggies and super greens in the cup and blitz it up and I have easy-to-absorb nutritional delights that I just have to glug down.
9. The hardest part about nights are: Pain. I used to suffer quite bad insomnia, and I sometimes get it still, and late night anxiety or panic attacks too, they’re not nice. But the most common issue I have is pain. Every night when I lay in bed my whole body is aching and exhausted. I sleep with loads of cushions that I use to support and protect all my achy bits, I’m hoping to invest in a memory foam mattress soon!
10. Each day I take these pills & vitamins: I used to live on painkillers, all day every day, back to back. I went through so many packs it was ridiculous! Since cutting out wheat and sugar and moving to an organic alkalising and anti-inflammatory diet in March 2015 I haven’t needed to take painkillers all day every day. I have found the pain more manageable and also just learned to cope with it and use natural pain relief methods and Magnesium salt baths. This includes taking plenty of turmeric capsules every day, I also take marine collagen for my joints, omega oils for my joints and brain, and some serious pro-biotics for gut health and immune support.
I have recently started Dr Myhill’s treatment program from her book Diagnosis and Treatment of Chronic Fatigue Syndrome: it’s mitochondria not hypochondria which I cannot yet give any real feedback on but stay tuned for a review blog post soon. It’s a lot of supplements that help support cell function and the proper metabolism of energy within the cells of your body.
11. Regarding alternative treatments: I have found nutrition and stress management to be the most effective methods for treating my condition. As I learn more about the condition and how it effects the central nervous system I would like to try cranial osteopathy and see my chiropractor more often to make sure that my spine and brain fluids are all good and everything is in good alignment.
12. If I had to choose between an invisible illness or visible I would choose: I just think that being sick is shit, whatever it looks like.
13. Regarding working and career: This has been really difficult for me. I have my own fashion business which I founded 11 years ago when I was just 17 with my late mother. It has been the only career I know and at times has put me in a place where I was achieving exciting and impressive things for someone my age. When mum died in 2011 I was left in charge and I loved the role, I got our first magazine cover, celebrity endorsements, everything was going great. It was an amazing way for me to stay connected to my mum and honour her legacy. Then I got sick. Chronic illness and entrepreneurialism do not work well together. My optimism and can-do attitude became delusional naïvety and blind faith. I kept thinking this was just a rough patch and in a few weeks/months I would be back to normal and able to sort everything out. The business was suffering with me taking months out at a time and unable to properly manage my team, staff turnover was high and the debts were piling up… When my father also died earlier this year I decided it was time to take a reality check and put things in place so that the business wasn’t so dependent on me. I decided to make my (previously) assistant into a partner and shareholder in the business and give her my job. She will run the business while I take some time away to prioritise my health. I totally trust her abilities and her determination to get that wonderful little train chugging again and back on the right track! It has been really difficult for me to “let go” of something that is so precious to me, like a child, that is so full of memories of my mum, and also to accept my state as someone who is “too sick to work”.
14. People would be surprised to know: How bad it can get on “bad days”!
15. The hardest thing to accept about my new reality has been: Loneliness.
16. Something I never thought I could do with my illness that I did was: Going for regular long walks and attending regular yoga classes.
17. The commercials about my illness: There are no commercials about my illness
18. Something I really miss doing since I was diagnosed is: Making plans and knowing I will stick to them! I miss the business of running errands and going to work then meeting friends and staying out late, then getting up and doing it all again. Being spontaneous and sociable and free spirited, and just having fun.
19. It was really hard to have to give up: Wheat and Sugar! I had known for a while that I should, but I used to have such a sweet tooth, and convenience food is your best friend when you don’t have the energy to cook. But after paying £200 for a nutritionist to tell me what I basically already knew, I could no longer turn a blind eye! The amazing effects were almost overnight, since that day I haven’t needed to take regular painkiller drugs.
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Run, and dance, and cartwheel, and get drunk with my friends!
22. My illness has taught me: To take care of myself, listen to my body, and cut out the crap!
23. Want to know a secret? One thing people say that gets under my skin is: “Me too” or “I know how you feel” when I answer “how are you?” with “completely exhausted”… smh
24. But I love it when people: Come to visit me!
25. My favorite motto, scripture, quote that gets me through tough times is:
I’m sorry, I forgive you, I love you, thank you! I repeat this either directed to my body or myself, or someone who I may be harbouring frustration towards. Also my mother used to always tell me “hope for the best, prepare for the worst and be satisfied with whatever comes your way”, I am trying to focus on this one and get better and putting things in place to prepare for the worst rather than being too optimistic and getting caught off guard.
26. When someone is diagnosed I’d like to tell them: “I’m so sorry”, and “you’re not alone”.
27. Something that has surprised me about living with an illness is: How time just flies by! I can’t believe how the last 4 years have just whizzed by and I have so little to show for them.
28. The nicest thing someone did for me when I wasn’t feeling well was: Sent a parcel of goodies in the post. After my dad died my friend Pandora sent me a card and some other little bits and bobs in an amazing gold envelope. It made me cry with happiness to feel so supported and loved. Since then a friend of mine has become very sick and I sent her some bits in the same envelope, I feel like it is magic and I wanted to pass on that wonderful energy to someone who really needs it.
29. I’m involved with Invisible Illness Week because: It can be very isolating having an invisible illness and the online community of people who know what it’s like has been really helpful, so I’m just adding my voice to the crowd.
30. The fact that you read this list makes me feel: Less alone.
If you know someone with an invisible illness please reach out to them and let them know that you hear them, you see them and you believe them. Little gestures go a long way.
Wishing you love and wellness,