This is a conversation I wish someone gave me when I first received my diagnosis. While it is tailored specifically to MS, I hope some of the thoughts are universal enough for any difficult medical diagnosis.
CW: Discussion of suicide, self-harm, and depression within this post. If you or someone you know is feeling suicidal, please contact Lifeline at 1-800-273-8255. If you are in crisis, text CrisisTextLine to connect with a crisis counselor. You are not alone.
After I got my MS diagnosis I went through a period of shock and relief. I was shocked that it was MS but relieved to finally have an answer. Ultimately, the shock overpowered the feelings of relief and I found that my emotions spiraled out of control.
I don’t remember the first couple days, I think I was numb from trying to process the information: it was like finding out a loved one had died. Every couple of minutes I’d get distracted enough to forget, but as soon as I turned my mind to it, my heart sank and it felt devastatingly fresh again.
The numbness I felt was me unable and unwilling to process the news.
I was aware of MS since High School because my art teacher had it. I remember my mom telling me about MS, explaining why my teacher may seem fatigued or snappy towards the end of an afternoon class. I also remember sitting in the art room, watching my teacher gush about Cezanne and thinking two things to myself: one, “Oh god, I hope I never get MS;” and two, “it would be the end of my life if I ever got it.”
I was wrong on both thoughts. I may have MS, but my life isn’t over.
So You Have MS
Welcome to Club MS where no one wants membership.
Right now you’re searching online for meaning and information. There is a lot of information out there and I understand that this post is going to add to the noise. I wrote a simplified post about MS, but I recommend checking out the NMSS for thorough information on the disease if you want specific medical details about MS.
I am not going to offer advice on how to cope with the news of the diagnosis, but provide insight into what I went through to normalize your experience to a certain extent. While working through a diagnosis is unique to each individual, there are certain aspects to the process that is universal. You are not alone in this journey.
There’s a good chance you will go through a range of emotions like I did. Hopefully, relief will be one of them because there is a sense of calm with finally having an answer to what is going on with your body. It makes what is intangible – tangible. What was presumed to be just in your head is now externally acknowledged by a medical professional.
These feelings of relief probably won’t comfort you past the first 48 hours or so. But it is something to keep in the back of your mind for later as you move through your coping process.
The next set of emotions may be frustration and betrayal.
I was frustrated that my body was attacking itself but equally betrayed by it. Here I was, at the end of my 20’s looking at a lifetime of disease; where Ash would have to take care of me if I progressed past a certain point; and I would be a physical, mental, and emotional drain to all of my loved ones.
As a younger person, the idea of having a disease or getting sick was something that happened to other people. I took what was presumed perfect health for granted. I remember thinking to myself: I lived my life relatively well, I was a good person, I did what I was supposed to, why is my body punishing me? What wrongs was I atoning for? This does not happen to good people.
I sank into a deep depression. I was completely lost about what I was facing, how I would face it, and how I would get through it. I felt completely selfish because I could only think about myself. I couldn’t and didn’t want to think about anyone else.
I went to a very dark place and stayed there for several months. There were moments where I was suicidal over the whole situation. If I killed myself, I would regain control of an out-of-control situation. More importantly, I would be able to remove myself from Ash’s life and no longer be a burden to him. The sooner I did it, the sooner he could move on and find a healthier partner.
I never acted on it, never made any serious plans. Instead, I pushed it down the road: if I start to be a burden for my loved ones – then I would do something about it.
I am not saying, nor am I recommending entertaining these thoughts, but by pushing the desire back it helped give me the clarity to healthfully resolve my thoughts on the matter and get to a point where suicide was no longer a viable option at any point in time.
It was around this point that I realized I was going through a form of grieving after getting the diagnosis. Grieving a medical diagnosis for yourself is, in fact, normal. It helped contextualize what I felt in the months after my diagnosis. It also helped me move through the stages more effectively because I now knew what I was experiencing was normal.
The Grieving Process
Getting a serious medical diagnosis is metaphorically experiencing your own death.
I don’t mean to be over-dramatic, but it is the tangible acknowledgment that something is different with your body from that point forward. Any sort of desire or belief that things will return to “normal” goes away and so there’s a point where mourning that loss is important.
When I first got my diagnosis I had to grieve for the loss of my former life. Nothing changed between October 7th and October 8th, 2013 other than my Neurologist said I had MS, but everything had changed. I was no longer the same person I was on the 7th. I was aware.
Even though I knew it was an almost 100% chance I had MS, there still was a small possibility that everything was wrong and I was perfectly fine. The neurologist I was seeing would walk in and tell me: “never mind, your body is acting up in a couple of stress-induced episodes and if I managed my stress better everything would be fine.”
But he walked in, said: “yes it’s MS” and I burst into tears of relief because I finally knew what was going on with me.
In my mind, I was now imperfect. I never thought I was a perfect person or I had the perfect body, but I was tainted. Now I had something that would shorten my lifespan and most certainly would kill me due to some sort of complication. The level of anger, betrayal, and frustration I felt was immeasurable.
I researched the stages of grief once I realized what was happening and I found that perfectly described my process of dealing with my MS.
Point of clarification: You don’t go through each stage in order, nor are you isolated to one particular stage at any given time. Skipping around is normal, as is working through 3 stages at once. Even when you finally make it into acceptance, there will still be times when another stage rears its ugly head and makes you feel like you’ve lost years of work.
Denial & Isolation
As I said at the beginning of my post, I could not process my MS diagnosis. I refused to. I still felt bad every time I thought about it, but somehow I mentally split myself between the part of me that had MS and the part of me that didn’t.
It was the other Deborah who was coping with fatigue, optic neuritis, and numbness, not me. She was the weaker and imperfect one, not me. I was healthy, but going through a low point. That is all.
I also refused to research beyond a cursory search about MS. Any searches I did were so surface-level that I was getting bad information and that was feeding into my denial.
These are the random facts that I remember sticking in my mind at this point in time:
- MS was going to kill me
- I had a significant chance of switching into SPMS before I was 40 and that was going to kill me
- I would lose all bodily function and abilities, my mind would go and I would be a vegetable and that was going to kill me
- I could not have children because I would spread the disease down to them
- There was no hope of managing the disease and I should give up on everything
All of these were false.
But by indulging my desire to be ignorant on the matter, I was not allowing myself the ability to move forward. I was wallowing in falsehoods which only fed into my anger and depression.
I also cut down on social interactions. This was partly because of the fatigue but also because I couldn’t be around other people. While I didn’t announce my MS to the world, I also didn’t want to tell people about it before I was ready. Avoiding people was the best way to do this.
There was nothing wrong with being in denial and isolating myself, provided it stayed temporary. I had to accept that I was in denial and I didn’t want to accept my diagnosis.
I repeated a mantra I came up with years earlier (bad grammar and all): today is a bad day, but tomorrow will be less bad; next week will be less bad and next month will be a little better.
I had to look towards the future and think about how future-Deborah would accept the diagnosis, but present-Deborah was not ready. Eventually, future-Deborah and present-Deborah would meet up and I would no longer deny or isolate myself from others.
This stage was the hardest and most dominant stage for me because anger is such an intense emotion.
If I slip back into any stage after my acceptance, it’s this one. Every so often I get really frustrated with myself because of the diagnosis: moments when I struggle to understand a simple concept, forget to do a simple task, feel particularly exhausted after what seemed to be a simple day, or unable to manage my emotions like I normally do. I point to the MS as the source of my frustration and am angry that I can’t be normal like everyone else.
But when I originally went through the anger stage – I was irritable with everyone. I resented everything. It was a rough patch in our marriage because I did everything I could to push Ash away. I wanted him to divorce me so he could move on with his life and I could wallow in self-pity and self-hatred.
But the person who bore the brunt of my anger wasn’t Ash, though he got a chunk of it, but myself. Since I was a teenager, I dealt with self-destructive tendencies. I have never openly admitted to this before because I never wanted to call attention to the matter, but I am someone who self-harms when I am feeling anger or anxiety. I usually hit myself, though I have been known to cut and burn parts of my body when I am in a particularly foul mood.
My episodes of self-harm increased during the initial period after my diagnosis. It was a means to try and literally beat my body into submission. This was, by far, the worse form of coping with my diagnosis. It was not healthy, nor was it productive.
I had to get to a point where I said: it’s okay that I am angry. I should not be angry with myself because I cannot control my body, but I should be angry with the situation. It’s okay that I feel like this is unfair because it is unfair, but it does not have to define me.
I can assure you that my episodes of self-harm have come to a stop since learning to be kind and loving to myself.
I would say that depression was the first major stage I went through during the first couple months. All the previous stages drifted in and out and played prominent roles, but there was always an underlying current of depression.
It doesn’t help that MS can trigger depression and couple with the feelings of fatigue, it was easy to come home after a day of teaching and sleep for several hours before Ash came home.
I slept. A lot.
I did what I needed to do to keep up my job performance and hide how I was feeling on the inside, but I stalled all work on my major projects and wanted to binge-watch hour-long shows on Netflix. We got a lot of take-out because I couldn’t bring myself to make dinner and simple household tasks went undone because I couldn’t bring myself to clean up after myself.
I mostly sat around feeling sorry for myself. I also felt awful for feeling sorry for myself, which triggered an out of control cycle of self-pity.
I eventually allowed myself to get to a point where I said it was okay that I feel bad for myself. I had to say: if another person was going through the same situation, what would I tell them? What would I want them to do, feel, treat themselves?
The answer was this: I would tell them that they have every right to feel sorry for themselves. It’s okay, embrace it, feel it, don’t ignore it. You need to feel sorry because it is a situation worthy of it. Be sorry that your life has changed, be sorry that things aren’t working out the way you planned.
If you need a few days to be in bed because you just can’t cope (and have the ability to do so), then do it. Take that time to rest and to heal and find a way at the end of it to move forward. But the most important thing to do is be kind to yourself. I used my mantra in this scenario as well: today is a bad day, but tomorrow will be less bad; next week will be less bad and next month will be a little better.
I wish I could say that I completely resolved my depression, but the truth is I don’t know if I ever will be able to because of the MS. While I no longer have brain lesions, I do believe that the MS partially triggers my bouts of depression, though I have found their frequency and intensity have lowered since accepting my diagnosis.
I am going to save this for Friday’s post because it really deserves its own space for discussion, but I think it took me 2 years after my initial diagnosis before I finally got into a place of acceptance. It may take people longer and it may take people a shorter period of time before getting into a space of self-acceptance. It isn’t a competition, so do not feel bad if your journey is taking a little bit longer than someone else’s.
Everyone is Different
One thing that must be repeated again and again: everyone’s experience with MS is different. What may fatigue me in minutes may not bother someone doing it for hours. What doesn’t bother me might fatigue someone else in minutes.
MS is a tricky disease and must be taken on a case-by-case basis.
Remember that you are an individual and therefore should not expect yourself to accept your diagnosis right away. If you find that it’s 9 months out and you are still waking up daily feeling depressed and angry about the diagnosis, be gentle and kind to yourself. It’s okay if you are not over it yet.
Being patient with yourself is the best piece of advice I can give at the end of this post.
Patience and self-compassion.
While this post was depressing, Friday’s post will be about moving forward, accepting, and working through the diagnosis. I will discuss how I worked my way through the grieving process in more detail and into a place of taking an active role in how I managed my MS both for flare-ups and my mental/emotional health.
If you feel open to it, please share your first couple days, weeks, or months after your diagnosis in the comments below.
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