Facing rare disease alone

Well, friends, foes, followers, life keeps moving forward. There is no pause. There is no off switch. There is sometimes no respite. I try to stay positive. I try to “keep my pecker up” but this year has tested me in new and increasingly pernicious ways.

Without playing an incredibly small violin just for me, I’ve been through a lot in my 33 (almost 34) years. This year though has been incredibly hard though and I thought it couldn’t get worse after my dermatomyositis diagnosis five months ago. A one in a million autoimmune disease, what could be worse?! Well, now, the final (I hope) nail in my coffin – my boyfriend broke up with me yesterday.

The more I write it the less I believe it. To me, it came as a shock. We had just passed our second anniversary, and to all including me, we seemed pretty strong as a couple. But, clearly not.

The famous words of Battlestar Galactica come to me: all of this has happened before. My first serious boyfriend and I had been together for about three years when I got sick at 23. It was a scary time. I had to quit my job; I was managing a few hours a day to work towards my Ph.D. The doctors had no idea what was wrong with me. I had fun tests like a spinal tap, no luck. I was put in that catch-all category – chronic fatigue syndrome. Good luck! Keep fighting! (we think now that this was a misdiagnosis of the autoimmune but that is a whole other blog post). But, all of this was a bit too scary for my boyfriend at the time. He broke up with me. Apparently I wasn’t fun anymore.

Flash forward to yesterday afternoon. I’m sat on the sofa eliminating bad guys in Doom (I’m so bad at it but I persist). J comes out looking pained. Part of me knew what was coming, had suspected for a few days. I don’t think we are meant to be together. He has felt this way since before I got sick, but hadn’t wanted to break up with me while I was sick. The other explanation was that we weren’t fun anymore. Me. Us. Our life together. Through the grapevine, I hear that monotony was the culprit. A monotonous life where I apparently just want to go to food festivals and he just wants to play video games. So there we go.

Thoughts on fun

Fun is hard to come by when you are suffering. Pain is intrinsically something that brings you into your body whereas, in my experience, fun is what takes you out of it. Takes you elsewhere, into something new and exciting. Fun had to change when I got sick. Instead of nights out with friends and drinks after work, or going traveling, or, yes, sue me, going to food festivals, we had nights on the sofa watching TV. This has been about all I can manage.

I’ll admit, I and my life are not fun at the moment. I mostly just sit on the sofa, read the internet, read books when I can, watch TV when I can, leave the house when I can. I made an effort to go to a three-day gaming convention (wheelchair assisted) and the incredibly cheesy Melbourne Show. I am going to a lit festival this weekend. I’d hoped J would join me for my upcoming birthday trip. We board-game with friends.  Aren’t these fun things?

My time during the day is marked by what medication or supplement to take and when. Routine is important right now. I need stability and consistency and to pace my activities so I don’t overdo it. I know that isn’t fun. My life isn’t exciting. So, yeah, don’t date the chronically ill if you’re after fast times and fun living. We are stuck in Groundhog Day where it seems every day is the same. The same medications. The same foods that don’t make you sick. The same nap schedule. The same aches and pains and malaise. And there is no way out: for many of us, we will keep waking up to the same day again and again. I hope I wake up to tomorrow one day, but the only way I will get there is by paying my dues – living this same day again and again and each day trying to get slightly better at it, slightly more energetic, slightly less sick. It is a slow and agonizing process.

Thoughts on breaking up with – or not breaking up with – someone when they are sick

I’ll borrow Nike this time: just do it. Don’t lead us on. Don’t feel that you have to be there for us. We will survive without you. We did before, we will again. Just do it.

Just tell us how you feel. Yes, people will judge you for being “that guy” who breaks up with their sick girlfriend. There are no two ways about it, it is a crappy thing to do to a person. But, life really is too short to stick with people you no longer want to stick with.

If you are reading this and you are a carer of someone who is ill, if you are having second thoughts or want an easy out – there is no easy out. Get some courage, rip off the bandaid, and just let us get on with our lives. We don’t need to be pandered to or coddled – we aren’t children. Just. Do. It.

But, I am here to remind you, that you can do this alone, friendly reader, whomever you are. If you are alone, and have limited friends or family or loved ones or are recently single or have always been single and you are sick, you can do this. You have the strength to get through it. It will be harder, and I don’t know why it is harder, but it will be.

Thoughts on facing illness as a couple

I must say, it was comforting to have someone in my corner when I got sick. It was terrifying and J wasn’t amazing at providing support in all the ways I wanted, but he did the very best he could and supported me in the ways he knew how. Financial aid was something I would have struggled without. Someone to pick me up from the hospital was nice.

I think though, that having a partner is a grounding influence when life is up in the air. You have someone to count on. You know someone will be there for you. Or, at least, you hope they will be. You were there for them.

For those of you facing illness as a couple, here are some of the tips I have on how to support your sick partner:

• Visit us in the hospital. Every night. We are scared and lonely and an hour of your time is just everything.
• Go to specialist appointments with us and hold our hand. We are scared. The future is uncertain.
• Celebrate the small wins. A good blood test, a reduction in meds, whatever it is, just take that moment of joy and recognize something good has happened.
• Put us first for a bit. Yes, I know that is selfish, but it is our turn. Come over and see us, even if you wouldn’t normally. This isn’t business as usual.
• Make dinners. We are too tired to cook most of the time. Dinner is a nice treat. If you can’t cook, get us takeout.
• Run us a bath. Muscle aches are horrible and baths help.
• Help us with our housework. I let this slide and now I am overrun with pantry moths. It’s not fun.
• Help us with our groceries. Again, we are tired and shopping is hard.
• We are alone all day and night. Text us entertaining things. This is good.
• Just be there. Just spend time with us just as we are. Don’t expect too much from us.

Thoughts on facing illness alone

I’ve done this before. I’ll dust off the manual and get to dealing with this disease alone. Yes, it is terrifying. I started the year with a job, a healthy bank account, my health, a boyfriend, friends, and family. I end the year with my job on hiatus, in debt, sick, no boyfriend, some good friends, and a much smaller family. How things change.

In reality, not much has changed. Aside from my list above, the support a partner provides you when ill isn’t really tangible. There is very little about my day to day life that will change now that I am single again. But somehow, when you are sick, there is that feeling of dread that comes with being single that just makes you feel like this is it. That you will never be enough for someone when you are sick. That you will always be alone. Who would want me like this? He didn’t.

But, I am here to remind you, that you can do this alone, friendly reader, whomever you are. If you are alone, and have limited friends or family or loved ones or are recently single or have always been single and you are sick, you can do this. You have the strength to get through it. It will be harder, and I don’t know why it is harder, but it will be.

Some tips:

• Be your own advocate. No one is going to fight for you now, so you have to do it yourself. Get the care you need, when you need it and make sure it happens.
• Remind yourself to eat. I know it is hard, but you won’t heal if you don’t put nutrients into your body. It is easier and more fun to cook for someone else but find meals you can cook yourself, and find stuff that works for you.
• Shower and paint your nails and get a face mask or a haircut. I know you don’t feel like it, and getting dressed up for a special someone is always more fun and more inspiring, but do it for you. Do things that make you feel good.
• Exercise. You won’t be getting endorphins from hugs and hand holding and sex and love so exercise is your only option here. Get out of the house. Go for a walk. See the sunshine.
• Put absolutely no energy into meeting anyone else. It is tempting to get back on the wagon, but realistically, dating when you are chronically ill is just too hard. If someone comes along, great, roll with it, but I would advise not looking for it because it just causes unneeded stress and anxiety and you don’t need any of that.

Some miscellaneous thoughts to finish us off

Breakups are sad affairs. There is no getting around it. Someone always gets hurt. It wasn’t mutual and I had very much let myself believe I had found my person. But, even amidst illness, life goes on. I will keep moving forward because that’s all you can do.

I have my pet birds to entertain me. I have some good friends to help me through. I may no longer have anyone to put down as my emergency contact, but I will keep going.

When this happened to me at 23, I was furious. I was so angry that after years of supporting my partner through their ups and downs, their mental health crises, their pain and their suffering, that the moment I needed something, I was deemed no longer fun. No longer worth their time or effort. It felt like a huge slap in the face to have someone end things with me when I was at my lowest point, after everything I did for them. But life isn’t an easy quid-pro-quo. I know that now. We don’t always get what we deserve from the people around us. They let us down.

Now, I am just mildly annoyed. Maybe that shows growth. It is all a bit deja-vu. I have given two years of my life, again putting someone else’s needs first, again supporting their ups and downs, their mental health crises, their pain and their suffering. And when I needed them to cut me some slack, grant me some grace, it was all too much for them. It wasn’t fun anymore.

I know I am a good person and I will get through this. I don’t know what the future holds, but I will keep getting out of bed every day. Just keep swimming. Just keep breathing.

I’ll end with this: “Hey, don’t write yourself off yet. It’s only in your head you feel left out or looked down on. Just try your best, try everything you can […] it just takes some time, little girl, you’re in the middle of the ride, everything will be just fine, everything will be all right.” (Jimmy Eat World, “The Middle”).

I’m not writing myself off yet. I will keep hoping for tomorrow.

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