Opening up about my MS

Recently, I came to a realization. Despite always speaking out about Multiple Sclerosis (MS), I felt like I wasn't doing as much as I should be, and I could have done a better job of it with friends and family.

In the early stages of my MS journey, I would speak at schools, educating the pupils about MS. I would also attend ‘Newly Diagnosed’ seminars. But, I clearly lost my way somewhere, and noticing that has hit me quite hard. It all stemmed from a breakdown I had in front of my sister because of the physical pain I was in. It followed a very tough week dealing with intense pain and not telling anybody about what I was going through. My sister said to me, “Unless you tell us, we don't know what you are going through. We may not understand everything you tell us, but we can't help you if you hide things”.

In a past relationship, I would often be told to ‘stop playing the MS card’. It was a very hard thing to hear time and time again. It devastated me to the point that I stopped speaking about my MS. I guess I was afraid to talk to my family or friends about it in case they judged me like my previous partner did. 

I decided to ask family and friends if there were any questions they have been afraid to ask me. In doing this, I hoped it would open up more of a dialogue and I would no longer need to hide my true MS self from them. Here are some of their questions and my answers, which I hope will help you if you are newly diagnosed or like me wanting to make sure you friends and family understand your disease too:

I know the backstory about your diagnosis, but I have always wondered how much of an impact it had on your mental health, and if it still does?

I'm not going to lie, when I was first diagnosed, I completely fell apart. In truth, it was a major myriad of emotions. The best way of describing it is to compare it to a grieving process. I grieved the person I might never get to be because of this diagnosis. I was angry, sad and lonely. It was a very dark time. Depression found me. Anxiety found me. It was scary and confusing. This went on for around six months before I began to face my diagnosis. 

My diagnosis still has an impact on me. I find taking antidepressants helps me. It's a low dosage but it tends to balance me out. I don't take medication for anxiety, as for me, it’s more about finding coping strategies. I still have bad days, but I think this is pretty common when you have a condition like MS. It's the lack of control over my MS that I struggle with the most. 

I have heard you speak about fatigue but does resting up a bit more alleviate this?

Fatigue is the absolute bane of my life! As a person with insomnia anyway, I feel like I am in a constant state of exhaustion. I genuinely don't know how I keep going sometimes, but what choice do I have? I am a mother, daughter, sister, friend and more, and I have responsibilities like everybody else. Fatigue and being tired are not the same thing. Fatigue is when a person sleeps all night but still wakes up exhausted. It's when simple tasks take way more energy than they should. It's when we rest but are still exhausted. It's going for a shower and having to lie down after it, because it took so much out of you.

You once spoke about how there were people who reacted negatively towards you when you were diagnosed. What do you think made them react this way?

There were two people in particular who reacted quite badly to my diagnosis. One invited me to a party of his. When I told him about my diagnosis, he never spoke to me again. Not a word. To this day, almost 15 years on. He obviously couldn't handle it. In my opinion, he couldn't have been much of a friend in the first place. I don't know exactly why he reacted this way, maybe he was afraid of the impact it might have on me. I guess I will never know.

The second was a childhood friend that I was quite close with. She was shocked by my diagnosis. She saw a change in me; I was struggling to come to terms with it and I guess she couldn't handle it. We continued to speak for some good few years but, for me, the damage was done.

It's quite sad because neither of those people will get to see the person I have become. They have missed the fact that, after the struggle, I evolved into a much stronger person. I became a fighter. I grew in so many ways. I became a better version of myself. Their fears of what MS would do to me were unfounded. They have missed out, but they will never realize that.

I have read that MS can take years to diagnose. Looking back on your own story, were there any missed signs that may have prompted you to ask questions sooner?

Yes and no. I have never been that graceful. As a child, teenager and adult, I was always quite clumsy. It was more a laughable thing with friends and family than anything. If anyone was going to fall or walk into a door, it would be me. I would literally fall over myself. In secondary school, I found that my concentration was quite poor. Looking back now, was this a cognitive issue? Perhaps. When I was 22 years old, I had my daughter Emma. I was really tired all the time. I put it down to being a new mother. Looking back now it wasn't normal. When she was six months old, my left arm started to go dead. My GP put it down to the fact that this was the side I was feeding Emma on and that it was probably her head lying on a nerve. I accepted this explanation. Looking back, I think that was my first symptom of MS. Fast forward four years, I received my diagnosis. 

Has MS affected your romantic relationships?

It most definitely has. It takes a great person to tolerate the emotions that come with having MS, and I do believe that a partner has to be tolerant, patient, caring and present. I can safely say that if the other person blames you for 'changes' in yourself because of MS, the relationship is not healthy. I was in this situation and suggested that maybe we should speak to someone. He wasn't interested in that option, so we muddled on for a long time after that. In hindsight, I should have walked away sooner. I also dated somebody else with MS for a while. From a 'they understand MS' point of view, it was good, but the relationship was lacking in other ways. I still date a little but I’m not really pushing myself to do so currently. 

Does MS impact on your sex life?

It does. Sexual dysfunction is quite common in MS for both male and females. It can impact your libido and more. For me, it has affected my ability to climax. As my bladder may not always be fully empty, sometimes it's uncomfortable. Vaginal dryness can be an issue. Fatigue also has a major impact on me.

Is society as inclusive as it could be to people with MS?

I would have to say no. If people visually see the disability, they are more inclusive but, if not, you can face discrimination. If I am having a bad day, people can see I am slower getting out of the car, or I might be limping slightly. When I am all right and moving better, I occasionally get questioned about using my blue parking badge. It is very frustrating. Friends that may use a wheelchair or walking aids often find that footpaths can be obstructed by delivery vans and large vehicles, which means they cannot get past. I know some people with MS who have very understanding bosses, but I also know others with MS that hide their condition. 

In your almost 15 years of diagnosis, you strike me as a pretty positive person. How do you manage to remain so upbeat?

Believe me, I am not an upbeat person all the time, especially first thing in the morning. I need at least two coffees before anybody can talk to me! I found that personally, in my journey with MS, keeping my head up and constantly fighting is what has shaped me to be who I am today. I have a whole network of MS friends and colleagues that I am very fortunate to know. Blogging to others with MS about my journey has also been a truly positive experience. My out-and-out stubbornness (while proving challenging to my family) has ensured that MS will never take me down for long. Consider every day you get out of bed and do whatever it is to ensure MS does not win, a victory.

It’s not always easy speaking to loved ones about MS, whether you’re newly diagnosed or years into your MS journey. However, it can help to open up about how you are feeling. To learn more about telling your partner you have MS, read here.