Surviving Relationships with a Chronic Degenerative Disability Diagnosis
by Emma Buckett
Hands up if you are completely and utterly, physically perfect.
If there is anybody in the world with their hand (or some such appendage) still raised, then they are either lying, or a delusional narcissist.
Everyone gets ill sometimes or breaks a bone or simply grows old, it is a fact of life and a certainty that cannot be denied. Nobody is immortal. Every person on the planet is unique.
My name is Emma and I have Friedreich’s Ataxia, a chronic degenerative disability, this means that there is no ‘miracle cure’ for my condition and as time passes I get more and more disabled and no amount of medication, treatment or tears will prevent my decline. Sound depressing? Yes, it is and it’s difficult, undignified and a whole lot of other horrid stuff.
However, I’m still here right at this moment and I intend to make the most of my life. I am at a point in my life where I have been dating and getting to know people with a view to, maybe, finding love and a relationship. This raises many questions for me and here I am going to attempt to list some of the issues.
I have lived with my condition my whole life, but this is not always the case. You could be in a loving relationship where you are both non-disabled and live a happy couple life that conforms to the norm. Then suddenly, one of you gets ill. It is not something they cannot recover from, it is a life-changing diagnosis that means that they will slowly lose functions in their body. They must deal with issues taken for granted such as continence, needing help with everyday tasks and even walking. (To all those walking people out there the thought of being in a wheelchair is horrific but in reality, we disabled people know that being in a wheelchair is just another way of getting around!)
So, if this happens to your partner it can seem like the worst thing in the world, your happy rose- coloured glasses have fallen off and reality has popped up to bite you. Your perfect partner might not actually be perfect and, shock horror, they are human!
I concede that even though it is your partner that this is happening to, it is one of the most overwhelmingly difficult things you will be unlucky enough to deal with. Watching the demise of a loved one is not easy, nor should it ever be. Sh*t happens to everyone. That’s life. Get over it. The person you love is human and none of this is their fault or your fault or anybody’s fault. Grow up.
And if it’s you? What if you are the one with the diagnosis? What if you are the one popping more and more pills as your health declines and you head for the grave at a faster rate than anticipated?
Fear not, being labelled with a diagnosis is not the end. You can date, have relationships, you can even have sex. You might need to be a bit more inventive to achieve these things, but hey, what’s life without a challenge!
A few pressing questions?
Are we going to be able to do normal things?
Are we going to be able to have sex?
Am I going to end up being my partner’s carer?
Yes, you will be able to do normal things, whatever you consider normal but you might have to plan or change the way in which you do them, no big deal.
Contrary to popular belief, disabled people do indeed very much like having sex and there are so many wonderful ways to do so. Disability may change things and present difficulties but it doesn’t mean it’s a no-go area.
For the real game changer, at some point you will probably end up doing some care for your loved one – if you are lucky this will just be something like cooking. Occasionally you may be required to help with something a bit more personal like toileting. I would like to remind everybody that everybody in the entire world, without a single exception goes to the toilet. Continence issues are one of those silly taboo issues that shouldn’t actually be a taboo.
When you are the person that has been diagnosed with degenerative illness that is completely beyond anything that you ever imagined to be part of your life, the first thing that you feel is the massive loss of control. You grieve for everything. Everything in your life is about to change, your life is not going to go the way you planned and you are going to lose control of your body. You might not be able to have everything that you wanted such as having children and everything is going to change because you are now going to have to rely on other people, your independence and your dignity is going to take as severe beating. I even went on a few dates with someone who refused to even hold my hand in public because he was embarrassed to be seen out with ‘a disabled girl’. I now know that this made him an ignorant idiot and should not have let it knock my confidence the way it did.
If you find or have found a loving partner to take the world on with you, don’t push them away. Life is hard sometimes for everyone and even if your life has more issues, you can deal with them.
All these problems are physical and you are so much more. Your personality, your drive and determination, your ability to contribute to the world, love and be loved are not affected. Don’t sell yourself short, you are so much more than your label.
Emma’s Blog is on our Blogs page. See especially: http://adventuresofpom.blogspot.co.uk/2017/09/being-single-and-being-outsider.html