I’m an ordinary person, with a wonderful husband and two adorable kids. I also have a diagnosis that came with disbelief, anxiety and despair. I have multiple sclerosis (MS).
I have seen so many friends and loved ones struggle with autoimmune diseases and some are even afraid to make it known to the world. Why? Is this something to be ashamed of? Is it a curse? Why do so many struggle to say, “I have an autoimmune disease”?
I was also in that place for a long, long time. I also struggled to come to terms with my diagnosis and to open up and tell those nearest and dearest to me about it. There is a level of confusion and self-pity that comes together with an autoimmune disease diagnosis and I do question, why me? Why is my body fighting against itself?
My husband initially struggled to accept my diagnosis, as did I for a very long time. We had challenges and hurdles to overcome and this required a huge life style adjustment, both practically and relationship wise. We had to make a deliberate effort to improve our communication, knowledge and information about the diagnosis and, of course, just do all of this with a lot of love.
Our children are 11 and two-and-a-half years old. I have given our 11-year-old a brief outline of the bare facts of the disease, but he is a really smart child and often asks questions. I always try my best to answer him honestly without making him afraid of the future, but this can be really difficult.
“If you’re struggling with a dread disease like mine, it’s not your fault and there’s certainly no reason to be ashamed or embarrassed.”
The hardest fact to accept is that this is essentially self-inflicted (not consciously or purposely, but self-inflicted nonetheless). Why does the body hurt itself? The answer is simple, but unsatisfactory: it just is! That for me was the most difficult part to accept. It might have been easier to understand and accept had I sustained injuries from an accident. That would be concrete cause and effect.
Unfortunately, having an autoimmune disease, and one as severe as multiple sclerosis, I began to question everything. Would my life ever be the same again and could I amount to anything? From the initial symptoms appearing in 2006 to being diagnosed in 2013, I can vouch that my life has changed dramatically – more so than I could ever imagine – and yes, I can totally amount to something.
I have all the symptoms that come along with MS on a daily basis and it’s absolutely hard to juggle motherhood, being a wife, running a household and having a dread disease. Symptoms range from pins and needles in my hands and feet, extreme fatigue, depression, loss of sensation, terrible headaches and, of course, the possibility of eventual paraplegia.
These are just some of the major challenges I have to face daily. I am on chronic medication to hinder the disease progression, but it will advance nevertheless, leading to further complications. So, I have resigned myself to taking it one day at a time.
Many of us feel social pressure from friends, family and others to excel in every aspect of life, and this can inspire us to do more. Unfortunately, with MS you have to accept reality; you can excel in some areas but you are bound to drop the ball when trying to juggle too much.
So, here’s a secret that I had to learn the hard way – it’s fine to drop the ball now and again. It’s okay if you haven’t been to the gym in a month, or if you’ve not washed your hair in over a week – these are all standards that we have set for ourselves, but certainly not requisites.
You’d be surprised that once you let people in, they are actually quite understanding and helpful. I want to encourage you today – do not be afraid to let others in. If you’re struggling with a dread disease like mine, it’s not your fault and there’s certainly no reason to be ashamed or embarrassed. Go on, tell a friend, or ask a family member for help if it’s required. Take every day as a gift and live one day at a time.
Written by Roma Kenneth.