In our house, invisible illnesses are not invisible. Both my husband and I suffer from them and they can be some of the most frustrating and debilitating illnesses to endure. When I met my husband, Neil, almost ten years ago, he started cancelling our dates quite a bit and I thought it was something to do with me. Had I offended him? Did he not like me as much as I thought? Was he blowing me off for someone else? The usual new relationship insecurities crept in and were soon sitting on my shoulders like a stereotypical angel and devil. His wanting to stay at home more often instead of being with me felt personal and it was, but not on my part. He was just trying to cope in a new relationship with a long-term illness that would forever be a thorn in his side; now THAT I didn’t consider, because I thought they were rare and as my little sister Rochelle had Myalgic Encephalomyelitis (M.E.), surely it was too rare for me to meet anyone else who had it! Unfortunately, not. In fact, according to ME Research UK, over 200,000 people in the UK and around 1 million in the USA suffer from the illness, yet it is STILL not suitably recognised in either country. Eventually Neil told me that he had M.E. along with Type 2 Diabetes, but it didn’t deter me. I liked him so much and he treated me well (which I wasn’t used to after my last relationship), that even though I hadn’t had much experience of it, I wasn’t going to let a “little thing” like M.E. get in the way of being with the man who I knew was “my lobster” (Friends fans will know what I mean).
Although life was difficult and frustrating coping with M.E., we kept going. We lived together comfortably and got our own groove going with duties around the house, only planned things we could cancel without losing money, and didn’t set too many things up in a week as there was a good chance Neil would be too tired to do them. It wasn’t ideal but it worked for us. We had to allow ourselves a life, even with the everlasting grey cloud of symptoms – fatigue, minimal concentration span, aches, pains, muscle spasms, sweats, problems sleeping, irritable bowel syndrome, dizziness and restless legs, to name a few – hanging over our heads. Things worked and although we have been through ups and downs, I managed to keep going and support Neil the best I could and vice versa. Back then I worked full time, had started my BSc (Hons) Psychology degree through the Open University, dealt with daily grind and we also endured some difficult times: my gran who suffered from Alzheimer’s passed away, Neil suffered heart problems and was diagnosed with Atrial Fibrillation, we lost my fabulous auntie Barbara to cancer and her beloved Collie, Star, not long after (RIP Auntie Babs and Star), which was all extremely difficult. It was near impossible to continue life as “normal”, but we did it; we just had to!
In January 2018, I contracted an ear infection which caused Cellulitis, a bad bacterial skin infection, in my middle ear. I was hospitalised for a few days and put on an antibiotic drip to prevent septicaemia, a serious condition where the infection enters the bloodstream, which can be fatal if not treated. I was lucky to have been seen so quickly at the hospital otherwise my story would have been very different. However, after being home for a few weeks, I contracted Post Viral Fatigue Syndrome, causing similar symptoms to Neil’s M.E.: extreme fatigue, restlessness, dizziness, sleeping problems and severe aches and pains. The problem was, after a few weeks of PVFS, it didn’t feel like it was getting any better. I was prescribed a high dose of Vitamin D and Iron tablets and still not much improvement! I was devastated. We could cope with one of us being ill all the time but both of us?! Nevertheless, Neil and I managed to go on our first summer holiday abroad that September for his 40th birthday, Tenerife! Never was there better medication than sun, sand, and relaxation. We didn’t do as much as we wanted to do, had to cancel some outings etc. but just being together in a warm, sunny place where we could relax and be happy was enough! We felt lucky for a change.
As much as we enjoyed being away, things didn’t improve much for us health wise. This time, I was in my husband’s shoes and to be honest, I didn’t care for it. I was constantly fatigued, had Irritable Bowel Syndrome, and couldn’t sleep. Even when I did sleep, the effects were never good enough for me to feel like I had! Pains throbbed from my head to my toes and some days I couldn’t even do the most mundane things like get dressed or make a cup of tea myself. My limbs ached, burned and tingled. My head felt like a lead weight and God forbid anyone should touch me; it was like a fire flowing through my skin and muscles. It was soul destroying and it was starting to affect my already suffering mental health. No amount of medication was helping, although thankfully I was put back on antidepressants to help me cope. I felt helpless, useless, frustrated; I couldn’t get any relief and the doctors were testing for everything, without results. Eventually, after several months of doctor’s visits and medication swapping, I was sent to the Rheumatology department at the hospital for diagnosis. The doctor concluded that I had Fibromyalgia, a chronic condition of widespread pain and profound fatigue. Invisible illness had struck again.
So here we are. Yes, we are STILL here. Going on with life like we have no pain threshold! M.E., Diabetes, Atrial Fibrillation, PVFS, Fibromyalgia, Depression … you name it, it has tried to knock us down, but we are still here, and we are still going strong. Maybe not always in health, but in spirit, in love and in life! I am now working part time in order to allow me to cope better and I’m on my final year of my Psychology degree; Neil has a new full-time job and has completed an NC Computing with Cyber Security course at college. We are changing life, one step at a time, to cope with things that have been thrown at us. You have to change things to suit you; life is not one size fits all! We may always have our invisible illnesses but if we have each other, I think we will be ok.
Remember that invisible illnesses are only invisible in a physical sense. With support groups, organisations such as M.E. Support and speaking about our experiences, we can make these illnesses less invisible socially and raise awareness of them in our communities and soon, countries! The more people speak out about their invisible illnesses and don’t hide away, the more people who don’t suffer can be aware and make it less taboo to speak about them. Do what YOU need to, what YOU can do and most of all, remember there is ALWAYS someone else who knows how you are feeling. You are NOT alone.