Betaferon: this was always going to be the hardest

At 25 years old, being told you have Multiple Sclerosis... well it's okay. In the grand scheme of incurable diseases, you accept this is one isn't that bad. What you aren't connecting with, is that for any 25 year old woman trying to carve out a space for herself in an otherwise grown up world, it's challenging enough. Then to have a label thrown at you for which you haven't asked for, don't know much about and have little knowledge of coping strategies to deal with, is significant. As naively as you approach having a chronic disease, you similarly put the magnitude of this reality aside and swiftly carry on, before anyone notices that you don't know how to deal with this fully, nor are interested in giving it any place in your life.

It catches up with you. But that's for your mid-30's self to navigate.

For now, your 25 year old baby-professional self, automatically looks at what MS will do to your current quality of life.

I don't want to be "sick". I want to be me. I don't want things to change. I want everything to stay the same.

Now, I don't know about you, but I was a very serious minded young adult. Everything I did was of the utmost importance as it was very important to me to do a good job. In this pursuit of doing well, I naturally set about dissecting this "MS-label".

Can I still work full time? Can I still fly frequently (nature of my job). What will my life look like in two years, five years?

All the feedback to these questions you're asking sound ok. You get to treat yourself, in your own space at home, you learn how to travel discretely with all your needles, and generally, you just crack on. All in your stride. Doing a jolly good job of it.

But then the time comes for your another injection. The autoject pens you get given are identical to the needle pens 5 year old diabetics use.

I see you 5 yr old, I see you handle this reality of a life time of self injections with poise and courage. I can be as strong as you.

What you can't see, won't see, is the tension, anxiety and fear that is in every fiber of you now. Scared that someone will notice you're upset, even worse scared someone will notice you are sick. Scared you'll be treated differently. Scared you'll be sidelined. Scared you'll be put in a hospital and given weak, milky tea for the rest of your life.

Full of fear and an aggressive approach to being ok, you load up your needle with the Betaferon. The injection itself doesn't hurt that much, like a small pin scratch. But the tension and anxiety that's been building up in your muscles and body does not help this process at all. Coupled with the flue-y feeling after each injection, you come to loath injection times. To the point where you miss a few here and there. And then you realise a week has passed and you haven't had any medication.

And you're still ok. No disability, no set backs. And secretly, no injections.

So why all the fuss? Why do I have to do this to myself? The pain:gain ratio doesn't add up. If I inject there's isn't any immediate relief. At this point in your freshly diagnosed existence you're not accepting the microscope impacts and activity that goes on in your diseased body. You're thinking about immediate pain and immediate relief. You're just trying your hardest to carry on like everything is the way it was 3 months earlier.

There's always a lot of people around you asking you questions about how the injections are going, have you read the needle anxiety articles, are you using ice on the injection site. Some would describe this, as a lot of support. And it is, but I didn't want it. It felt contrived and awkward. Who were these people inserting themselves in to my everyday? Certainly no one I had asked to be there, that's for sure.

Yeah all good. My standard response. I could not have been more disinterested in interacting with these people, these groups, if you'd have paid me. See problem for me is that I very much see myself as a typical girl, nothing special, nothing different, stock standard. Problem being, my medical condition automatically puts me in a different category. And I hated everyone associated with that category for the simple fact, that just like any child/ pre-adult, I hated being different. I felt exposed, alone and very much afraid. I didn't want to move myself in to that psychological space that I was associated with sick people.

I have to tell you though, hiding a disease is tiring. You pull yourself together and accept that having missed quite a few injections (not having one every second day, sometimes only having one a week). You know this is not sensible. You know how sad your mum would be if she knew, you know how much she would want to help. So you try again.

Any injection site, thighs, stomach, arms, bum. It goes more or less in to straight in to muscle (ouch). You have already damaged your thigh muscles form injecting in frustration and under tension, a permanent mark on your leg that will always remind you that you are human, and not a robot. Humans need calm and stability. And are fundamentally flawed, full of lovely mistakes and cheerful regrets. Not just cold action.

Seeing as you've hurt yourself so many times on your thighs, you physically can not release the injection on that site anymore. Your stomach is flat and muscly so hurts more then your thighs, and you cant reach the back of your arms or the side of you bum with out the needle being on an awkward angle, so it always hurts.

You're not injecting properly.

You get physical help, all it takes is for another person to administer the drug for you, for you to realise ignoring the well known, widely accepted and documented negative reaction to self-injecting, is actually a thing.

If you or someone you know has been prescribed Betaferon (or any of the interferon drugs), read the literature on needle anxiety. Talk to the people in your home about what you're thinking about, ask for ideas about how to get the injections in comfortably, talk to your MS nurse.

I did none of these things.

And within a year I had a significant relapse. Lesions were now active on my spinal chord, as well as my brain. Not necessarily because Betaferon wasn't right for me, most likely because I wasn't taking the full dose.

Treating MS does not have an immediately noticeable benefit to you, like a diabetic would feel instant relief form insulin. Treating MS is microscopic, cellular and you wont get instant relief. What you may get, and why we all go through treatment, is based on a hope that we arrest the disease in its current state.

My swiftness to carry on and not change anything in my life, meant I had no space to accept the fear and nervousness around self-injecting. Maybe my journey might have began and ended with Betaferon. Maybe I could have stayed at that treatment pathway and that would have been that?

Who knows. What I do know is that me not coping with injecting, that was just the beginning. Whatever treatment is your first, it's likely this may be your most challenging. As well as the mechanics of the medication, you are still coming to terms with this new reality.

I thought I was alone, I thought I was the only person in the world who hated this so much and I also thought I couldn't tell anyone, how much I hated everything.

All of the above I still find myself thinking, but nothing I do anymore is by myself. I write privately, I keep my anonymity as much as I can as its important to me, but I read journal articles about new research for treatment that might come my way, I read blogs about what really happens, I try and connect with other MS patients on line and read their stories. So so often, I read stories that are more or less the same set of circumstances (give or take) as my own. I feel like one of so many, I feel normalised, I don't feel alone.

For me, and maybe for you, feeling normal is the best xx