Content warning: This post contains themes of suicide and mental illness that some readers may find triggering.
Up until just over a year ago, the most difficult thing I’d experienced in my life was losing my brother to suicide when I was 15. It saw me spiral into the depths of despair swiftly and entirely. Our friends surrounded us with love and support, as my family became consumed by grief.
He was my half brother, so our Brady Bunch style family experienced much contention. Many wanted someone to blame, as so often happens during times of tragedy. No, no one was to blame. No, searching for blame didn’t help. But, you search for a reason, to rationalise, to ease your own guilt, and to try and soften the grief.
After the funeral, life resumed somewhat normally. Those who had surrounded us began to thin and dwindle, as the shock of such a tragedy started to ease. They had their own lives to continue with, and their own challenges to contend with.
The problem was, we were all still so grief stricken that withdrawal into ourselves seemed like the only option – well it did for me, anyway. Pure self indulgence evolved, because I didn’t have space in my mind for anything else. Being a teenager was difficult enough without being challenged with something like this. The trivial problems of others became inconsequential.
My coping mechanism was to be as self-deprecating as possible. I felt so terrible anyway, it only made sense to treat myself badly; drugs, alcohol, questionable company, and unhealthy situations perpetuated my self-loathing while facilitating the escapism I so desperately needed.
A psychiatrist eventually diagnosed me with depression and I was put on anti-depressants to assist in coping. At this time, my depression was triggered by a tragedy. I know for many, there doesn’t need to be such an extreme trigger to develop depression, but for me, this was it. It was a dark, all-consuming time.
Though after several years, I started to reengage with life. I found a love with my high school sweetheart that helped guide me back. Bad days became fewer and further apart. I was still sad at times of course, but life began to become bearable again, and I was able to find joy in things.
The thing about grief is that there really are stages. There is no set time period for each stage, but you unconsciously move through them. Well I did anyway, though I would never be the same. My difficulty was in accepting that while my world had been obliterated, I had to witness the persistence of life going on around me. People continued to live their lives as though nothing had happened. And before long, less and less people remembered what had happened to my family and I.
Why? Because: Life. Went. On. I remember feeling furious about this. It didn’t seem justifiable that it went on, when my brother’s never would again.
When I was diagnosed with MS at 28, a similar thing happened. Grief and depression settled themselves back into my existence like it was yesterday. In retrospect, it had actually been a gradual development. The year prior to my diagnosis, the sadness had started to creep back in, inexplicably.
But it was a sadness that lacked the desperation that I had previously experienced. It instead became recognisable as hopelessness. It wasn’t dramatic in any way: it was pointlessness. I had experienced some fairly traumatic events surrounding a previous relationship (dating a sociopath will do that), and began to put it down to it potentially being the fall out of that.
I was alone a lot. My partner at the time was away at work (FIFO) nine days a fortnight, I was studying and working two jobs, and also felt unwell a lot of the time, without understanding why. I remember speaking to my younger sister several times on the phone, querying what the point was; of life, mostly. Of trying.
I remember simply thinking that one day we would be dead, and then what would anything matter? Like I said, it wasn’t in a dramatic, wailing ‘Oh dear God, what’s the point in anything!!??’ – It was simply a practical observation, albeit quite a bleak one.
While this had been occurring, the actual diagnosis was the trigger that sent it all into a new realm. I know now that there are several lesions (scars) in my brain that assisted these feelings along. Unfortunately, depression is yet another symptom of MS. As are unpredictable mood swings and mood changes.
The same way a MS brain sends messages incorrectly to our physicality, so too can it disrupt your ability to regulate mood stability. I have bouts of hysterical crying which creep up out of nowhere. I won’t even really be feeling sad, but out it flows. I can ugly cry like there’s no tomorrow.
Anyway… I spiralled. I was doing all the ‘right’ things, such as seeing a psychologist, to help with the transition. But things got worse before they got better. I wanted it to be over, stat. I started resenting my brother for taking his own life, because it took that option away from me. I had witnessed first hand what suicide does to a family and I wouldn’t wish it on anybody.
However, even though I knew this logically, it didn’t stop me from thinking about it – constantly. My life as I knew it was over. The only way I could envisage the rest of my life was as a burden on my loved ones, in a body and mind I no longer recognised or identified with. My independence was lost, as was any sense of future and hope. I felt incredulous that this was happening to me.
The rate of suicide in people with MS is extraordinarily high. In various studies throughout the world, it is reported as more than double that of the general population, which is also far too high. And, I totally get it. It is a lifelong sentence, one which can initially be so shocking and confronting that the thought of suicide becomes the a viable option.
It cuts short the inevitability of a slow, painful, undignified decline, and ceases the burden you become on your family. That’s how I was thinking, anyway. So, when I hit rock bottom and I was making plans on how to do it, I called my Mum and said “Help me. I need help. Please.”
My family and friends have saved me so many times since diagnosis, probably most of the time without even realising it. I was provided with financial, physical and emotional support that I never, ever wanted to have to rely on, but was so grateful that I could.
Things didn’t start looking up straight away after that phone call, but it started a gradual path on the incline. Strategies and assistance were put even more solidly in place, and I started to accept that people really did care, they wanted to help, I was loved, and it was ok to accept this help without identifying as a burden.
Everybody has down days. It’s only natural. Human beings are incapable of feeling joy and happiness ALL THE TIME. To be honest, if I knew someone that was happy all the time, it would probably freak me out. To be happy all the time isn’t realistic. Ignoring pain and grief is a dangerous path; it will always come back to bite you. For me, though, positivity has become a daily necessity.
And, this is what I gradually started implementing. It has brought me peace countless times since diagnosis. Acknowledging gratitude provides me a with a constant reminder of how lucky I am in this life.
Yes, it all sounds a bit like I’m looking for light in what seems like a very dark tunnel. It’s a little like people saying a bird shitting on you is good luck, as is rain on your wedding day. People are trying to turn a shitty situation into a positive (excuse the pun).
But I get it – if we didn’t, life would be all consuming. Often we do become overwhelmed and wonder if anything else could possibly go wrong. In the meantime, we are quick to forget the good in our days, even the simplest thing, and instead we perpetuate the crappy things.
Listen: Being chronically sick turned Sylvia Freedman into a warrior for other women. Post continues after audio...
But thank God life does goes on. If life didn’t continue on around you, the entire world would be curled up in fetal position, rocking back and forth, with no place to go, because everyone would be too broken by their own story. We need that reminder that life goes on so that eventually we can be swept back into it. I genuinely believe that we only get given what we can handle in this life.
I also believe the old cliche that everything happens for a reason, and that something positive ALWAYS comes from something negative. Whether it be getting fired, heartbreak, losing a loved one, or being diagnosed with MS, this is always the case. Sometimes it feels like a pain so consuming that recovery seems impossible, but somehow we must find our way back. What purpose do we have in this world other than to learn as much as we possibly can, and spread as much love as we possibly can?
So, if I can spread a little love and brighten someone else’s day just a little, making living life just that little bit easier for them, then I think it’s worth it to keep on living. Not just surviving, but living. Life is hard enough without spreading more negativity in this world. Be kind to others, and be kind to yourself. We’re all gonna mess up at some stage, but we’re also gonna do good, too. And remember, somewhere in this world, no matter how bad things seem, someone else is having a worse day than you are. Maybe that’s depressing, but I like to use it for perspective.
Look, I’m definitely not saying I’m glad I got MS. I think people who say that MS is the best thing that ever happened to them (it’s true, I’ve read this several times) need a bit of a reality check. BUT, I can appreciate the positive spin they are putting on it, and for me, with the negatives, tremendous positivity has also come; the endless and even greater love and admiration I have for my incredible family and friends, as well as the facilitation of the ability to take some time out, something I would likely never have done had it not been for ill health, are two of these many things.
The latter has been a luxury few are afforded, and while I have been sick a lot of this time, I have also developed and discovered so, so much about myself. Don’t get me wrong, I still have bad days. Over the last few weeks, my latest MRI results, relapse, necessity for medication change, and other personal issues have challenged me extensively. I still cry, I still feel sad, lost, and uncertain. But I also know that this too shall pass.
If you or someone you know is struggling with mental health, please contact Lifeline on 13 11 14. If you are in immediate danger, call 000.
This post originally appeared on Ms. MS Unmasked and was republished here with full permission.