Hidden Illness

The Great Unease

One thing I have learnt over the past 10 years since being diagnosed with a life-altering illness, is that I am yet to feel at ease with my life. There comes a time in your life, when you hit the big THREE-O and you’re supposed to have your shit together. Well, I thought I had my shit together; turns out, I haven’t.

You see, I’ve always been an old soul. I’ve always known I wanted to settle down, get married and have pets (never children) and while it seems I am on track with my life goals, I am still feeling the great unease surrounding who I am and what I bring to the world.

Since I was a young teenager, I’ve always wanted to be famous somehow. I wanted to sing, but stagefright put paid to that dream – likewise with acting (for which I was awarded an ‘exceptional’ from my year 8 Drama teacher) and performance anxiety has shrouded my life in many ways.

I’ve always had the fear of being like everyone else. When I was at school I made it my plan to stick out like a sore thumb – and was bullied because of it. But I was stoic in that I didn’t want to fit in and be like everyone else, so I took it and it made me strong.

Yet here I am at the age of thirty, wanting, in part, to be like everyone else. Not, in the sense of I want to be in a job I dislike, pay rent to a greedy landlord and have children drive me round the bend, but in the sense that I want to be a productive member of society. (You have no idea how much I hate myself for saying that!)

Living with an incurable, oftentimes debilitating illness means I am not a ‘productive’ member of society. I am unable to follow my career goals (of which I have had many, shot down in a blaze of smoke) and now I’m left with a sense of ‘now what?’

I felt so compelled by these feelings of unease that last year I enrolled onto a distance learning Degree in History and surprisingly to me, I’m doing very well on my first module (If I was studying at a brick uni, I would be at distinction level!) and I’m really enjoying spending time wisely, studying. I no longer felt like I was wasting away in my bedroom waiting for the weekend when I get to spend time with my partner of nearly 3 years.

However, I’m now nearing the end of my first module (of which there are 6 – one per year) and I’m finding myself twiddling my thumbs again. I’ve started the audiobook of the set book for my next module yet it doesn’t start until October.

People think being at home and ‘off work’ is a dream lifestyle. I won’t argue that it has its benefits – I can stay up as late as I want and wake up as late as I want, for example, but I’m also trapped inside 4 walls for 90% of my day and two thirds of the week. As an unworking woman, I do not have the funds to be galavanting around in a car (I can’t drive manual and cannot afford an automatic car) nor do I have the energy to do so.

I spend my days lying on my bed in various positions (shifting when the pain becomes too much to bear) and it’s demoralising. Seeing all those people on Instagram going places in life makes me feel uneasy. In the pit of my stomach I feel the longing to have a ‘normal life’ like all these people I watch every day.

But then, I have to remind myself, yet again, that I’m not normal. I do have an incurable illness and I will have it for the rest of my life. It’s really really hard to balance this unending feeling of disquiet in my soul, with the knowledge that I’m doing the best I can. I have an enquiring mind and I want to see the world – this is in complete competition with the fact that my body was not built the same way as my mind. My body is broken, but my mind is sharp.

How does one reconcile a life wanted, with the life given? How does one overcome the odds when they are all stacked against you? This is something my mind continues to wonder, while I lie here, in pain, day after day.

She said yes!!!

No, this isn’t an engagement announcement, before you get excited… This is a ‘my doctor said yes to putting me forward for female sterilisation’ announcement.

Let me start by explaining how much I do not want children…

I started life like a normal little girl; I loved playing with dolls and pushchairs, I loved playing family with my collection of Barbie and Ken dolls and I had already named my little girl ‘Pansy’ that I was going to have with my first boyfriend at the age of five –  Ryan Bass – Yes, Pansy Bass, that poor imaginary child, I am so sorry.

It wasn’t until after I hit puberty did I really consider having children. It wasn’t something I thought about at all, in any serious way. This carried on until I was around 23 and in my first sexual relationship. I have always been firmly on the ‘pro-choice’ camp but my boyfriend at the time was ‘pro-life’ which, now I look back, is another reason why I’m so thankful I didn’t have to deal with any pregnancies while with this Manchild.

My situation hasn’t altered much in the last 7 years since that relationship ended, in terms of where I live (still with my parents) and I’m no longer able to work, but I am in a long term relationship with a man; a man who teaches children for a living.

One of the first cards I threw on the table during our first date was that I didn’t want children and that it was non-negotiable. Thankfully for me, he was okay with that and he said he’s not fussed about having children either way.

In the back of my mind, I do worry sometimes that my complete lack of maternal instinct will someday impact on my partner’s ‘not so bothered’ status – I absolutely, utterly, do not want to force this lifestyle upon anyone and my choice not to have children is mine alone. I am unwilling to be responsible for any regret someone may have who ‘wasn’t quite sure’ later down the line if/when they then watch their friends have children and wish they had that too.  You simply cannot read people’s minds, no matter how hard you try, so a huge amount of faith and trust goes into a relationship, which isn’t easy!

You may have read previously that I have an inherited connective tissue disorder – possibly from both sides of my parents. It has impacted my life in a huge way and has changed my entire life’s plan more than once. The only time when me and my illness see eye to eye is when we talk about having children (or not!)

My body does not want to carry children, it has made that clear – it can barely carry itself, let alone an 8lb baby. I do not need to go into detail as to how my condition affects me, but I will say that I wouldn’t want to pass this condition on. It’s a horrible illness and I am not prepared to be responsible for a person with a lifelong illness, as horrible as that sounds.
I may get some responses of protest to that statement, but I honestly do not care what anyone else thinks about my view on disability. As someone who is herself disabled, I believe I am more than entitled to have this view on it.

I’ve written previously about my love of sex, travel and antiques and I stand by it. I am thirty years old. Next year, I plan to buy a house with my partner. We plan on travelling all over the world (if we can afford to save enough, whilst paying a mortgage on one salary!) and we like expensive furnishings. We can afford to be self-indulgent and selfish and I want to keep it that way. I love my life the way it is.

To me, having children is like a ball and chain. I personally don’t see any attraction in becoming a Mum. The lifestyle of parenting looks like hard work, that goes unpaid. I do not have a maternal instinct so the ‘love’ I’d feel wouldn’t outweigh all the negatives; the tiredness, the wailing new-born at 4 in the morning, the toilet training, the babyproofing… the list is endless.

My slightly older sister (by 3 years) has an 18 month old. I love him to bits; he’s hilarious and cute at the same time. I’m very much a proud aunt. But, I see what my sister has to go through every day and I thank my lucky stars I’m as free as a bird and I have no responsibilities other than washing my clothes and paying my £10 a month phone bill.

Earlier this year I spoke to my GP about being sterilised on the NHS and the first thing he said was ‘no chance’ because the CGC or whoever simply wouldn’t consider it; I’m too young blah blah blah. I went home with my tail between my legs and felt rather deflated.

I told myself, I’ll leave it for a few months, then try a different doctor; a lady one, hoping she’d understand more, being a woman herself.

As soon as we sat down, I started explaining about how my coil isn’t working for me and I’d like to explore more permanent options. I mentioned permanent sterilisation and she started talking about how often young women come and say they want to be sterilised and then they come back crying saying they want to be able to have a baby at 35.

I looked her in the eye and said I’m not one of those women. I haven’t wanted children since I was 16 and that hasn’t changed and it won’t ever change. She said to me that she could say yes on the spot… as if trying to call my bluff and I said ‘why don’t you?’, she looked at me blankly, paused, and then said ‘okay then, I will say yes, if that’s what you want’. I replied ‘Oh my God, really? Yes, please, I definitely want that’ and that was that. She briefly mentioned having to get funding for it, which I know will be the next hurdle.

But, in the end… she said yes and I couldn’t be happier.

Today, I smile.

A wonderful thing happened to me last night.
I received this comment from one of my followers on Instagram…

12592406_443729105826646_2987259939652496416_n….in response to this image I posted to my Instagram account last night. I was feeling bummed about how ugly disability aids are – my wrist splints (worn most nights) are a hideous shade of ‘nude’ and are really really ugly…

splint

I’ve written briefly about my hidden illness before. I don’t often post images of myself when I’m having a flare up, but if on the rare occasions I do, I get this sort of response from just one person, it makes the pain of living with my condition, so much more worth it.

Here is my message to the world:

You may see me on Instagram with a full face of makeup on, my hair clean, nails done… but what you don’t see is how I feel once I’ve done all of that, or on the many days in a week where I physically cannot do any of that – which is why I posted this image above. To remind everyone that we’re all human and sometimes, we just need support – physically and mentally.

I’m sat right now wearing yoga pants, a hoody and a dressing gown with my hair scraped into a bun. I have no makeup on and I’m in a lot of pain all over my body but the comment above has brought a real smile to my face.

So thank you, Shewolfcollective, thank you for recognising my struggle and thank you for your kind words.