About four years ago I came to the realisation that I would not be a parent.
There has been immense joy and incredible sadness as those around me have children of their own while I do not, and will not.
I have no known fertility issues. This conclusion was reached solely because of the impact my chronic health condition has on my life. Others with the same chronic illness have reached different conclusions within their own set of circumstances. There is no right or wrong.
After a year of counselling to help with this topic, I’m starting to be able to open up about it, but on my terms.
So it’s something that I’m going to discuss more from now on, from time to time. I need to talk about it. Until I started mentioning it, I had not come across anyone else who was in the same boat as me; childless through chronic illness.
While I’m going to start talking about it more, it’s still a very delicate subject.
It’s hard for those around me too, as they then feel cautious about sharing the most monumental and amazing journeys of their lives. Please know that your joy does not cause my pain. Please don’t let my pain diminish your joy. I can be happy for you but sad for myself at the same time; something I hadn’t realised initially.
While support and sympathy and assurances that I’m not alone are welcome, unsolicited advice is not tolerated on this topic. By that I mean, please don’t contact me asking if I’ve considered adoption or surrogacy or to tell me to not give up hope yet. I absolutely cannot stomach such comments.
“So how does this even work?! When you’re obviously at opposite ends of the energy scale!”
This stranger had just voiced the biggest fear I had when I felt ready to enter the dating scene while being invisible, chronically ill. Even after two years of marriage those words stay with me.
An outsider took one look at us as a couple and made the assumption I feared people would make; that me and him aren’t compatible and that the differences between our healths would be too great. They won’t even remember saying it. They probably don’t even think of me. But I remember.
Instantly my mind told me that my illhealth made me less. That I wasn’t as worthy or as worth it. That stranger voiced all of that, heavily subtexted within five minutes of meeting me.
Why would someone pick me? What could anyone see in someone as restricted as me? What was in it for him? Was he taking advantage of me?
I had known people would question it, but until this stranger did two years into our relationship, no-one had ever said anything to my face.
In making this flippant statement, all of those concerns that I’d worked hard to quiet, came back to the forefront of my mind.
I don’t even need to dignify that stranger’s question with an answer. Anyone who knows us will know how well this relationship works. When I was healthy I’d never had a relationship like this. I genuinely didn’t know they were possible.
It took a good long while for me to see that while he might be the best thing that’s ever happened to me, the thing that could well have saved my life, I am exactly the same thing to him.
Part 1 of a new blog series M.E. myself and him.
I will never tell anyone else to “Never Give Up Hope” with regards to meeting someone like I have. I find it patronising and offensive; we can only ever comment on these things from within our own experience. I’ve never understood why others feel so confident in making statements about how “It Could Happen For You Someday Too.” For a start you have to feel physically well enough to start dating. I hope it does happen for you if that’s what you want. I hope just sharing my story might give you a glimmer of hope but we can talk about it all another day if you like.
I am always proudest of my bouncebackability. While my body remains weak, my spirit has a way of dusting itself off after each and every setback, flare, crash or bump in the road, and it just keeps going.
I am more than a little under the weather at the moment. But it’s got me thinking about how, when I feel at my most vulnerable, most fragile, and at my weakest, I am actually at my strongest.
As individuals with chronic illness, and in-particular those with misunderstood and stigmatised M.E, I see a quiet but unrivalled strength in every one of us.
Our ability to find hope, even on the darkest days, is second to none. And when we do waver, others within the community scoop us up and help us to cling on until the latest storm has passed. I’ve been helped back up this last week, by people enduring their own battles but always selflessly willing to hold my hand when I need it.
We have an incomparable ability to savour and celebrate the seemingly mundane. Our bodies may be floundering but my goodness are we gutsy in the face of adversity.
We have the strongest spirits of anyone I have ever known. I am in awe of us. Every single day.
I was fresh out of university, working at my summer job, applying for graduate schemes and full-time work. I was the girl who could roll up an large inflatable quad bike circuit on her own, in answer to the question “Why’d you bring a girl?!?” that my dad would get asked.
And then I got a virus and I never got better. It’s been 10 years. And the symptoms of that virus have never left me. From the start, I did everything right to recover. I rested. I gave in to it, rather than fighting it. But M.E. doesn’t care.
It’s luck and chance (and most likely something in our DNA – watch this space!)
They estimate that 10% of people with some viruses can develop M.E. This coronavirus seems to be one that can lead to this long-term, debilitating life of chronic illness.
You are not untouchable. Anyone could develop M.E.
You do not want this ‘Post Viral Fatigue Syndrome’ life. Once you have it there’s little you can do about it. To say I wouldn’t even wish it on Boris Johnson might just sum up how much of a disaster zone this illness is.
Please keep protecting yourselves just as you did at the start of the pandemic. Not just because of the threat that covid-19 poses, but because of the chance of developing M.E.
Keep social distancing even as the government tells you you can relax. Wash your hands. Wear a mask. And ultimately, don’t vote for a political party that will always care more about the economy than its people.
I absolutely do not wish for anyone to have to experience ‘lockdown’ any longer. Just please be careful and protect yourselves (because your government aren’t) as you start to taste freedom again. The thought of anyone getting Post Viral Fatigue Syndrome that leads to M.E. devastates me.
I am often so cautious to add a disclaimer to posts about progress or snippets of positivity. Without one, I have people in my life who assume I am “cured” or that my life is easy. But I am learning that I am not responsible for the ways others interpret me. (And I am also learning to stop making assumptions about what other people might be thinking!)
So today, for me, I just want to share some of the gifts this almost-decade of illness has given me.
An ability to laugh with real humour at situations I cannot change.
An even-more-wonderful-than-before relationship with my parents.
Strengthened friendships with those special few.
Guinea pigs! An excellent selection of only colourful clothes.
A chance to try out a pixie cut!
Time with my grandparents I wouldn’t have had if I was well and working.
Increased feistiness over injustice and inequality.
Most recently, an increased sense of self worth.
A range of novelty slippers.
The most supportive people I could ever image who live in my iPad; some of whom I’ve had the pleasure of meeting in real life.
Happy tears. So many happy tears.
A new definition for what makes a ‘good’ day. A level of appreciation I’d never known.
A seemingly unconquerable soul.
The knowledge that you can feel more than one feeling at any given time.
The opportunity to relearn things or experience things again as if for the first time. (Most people only get that once in their lifetime.)
The awareness that I am a work in progress, and should always be one.