Dealing with MS Diagnosis
Well, if you’re reading this… you or someone you love has been recently diagnosed with Multiple Sclerosis most likely… or you have been diagnosed for a little while now. In any case, I wanted to share the ‘emotions’ I went through when I was diagnosed. I still go through some of these emotions at times, if I’m in a relapse.
(These stages are not in any particular order; I’m just listing them as they come to mind.)
- Relief – That sounds weird right? That I was ‘relieved’ once I heard the words, “You have MS.” However, it’s the cold hard truth of the matter, for me anyways. I didn’t know what was going on with me and what was causing the symptoms I was having. I, of course, looked online for what it “could be” and that wasn’t such a great idea. I thought I had a brain tumor or something… so I was of course relieved when I found out that I did not have any sort of tumor.
- Confusion – I know that a lot of people might have had SOME knowledge as to what Multiple Sclerosis was before they were diagnosed, but I wasn’t one of those people. So I had no clue what it meant, how to treat it, is it genetic, what do I have to do to get back to “normal”… Unfortunately, I was seeing a “general neurologist” and he basically answered a few questions for me, then handed me a packet and told me to call the number in it to get on Avonex.
- Overwhelmed – Now I’m just overwhelmed with information and overwhelmed with so many questions on what to do next. I, of course, came home after I was diagnosed and started researching Multiple Sclerosis. Now, the main thing I saw when I was researching back in 2010 was disabled, wheelchairs, people crying, etc. So that didn’t calm down my emotions what so ever. My husband and mom did this research with me, because I was having visual issues and couldn’t see properly to read it for myself. So while I was being overwhelmed, they were going through their own emotions of what was going to happen to me. In which case, I didn’t even think to ask them how they were doing because I just didn’t know what to do or how to feel.
- Shock – I feel like I was in shock at some point after being diagnosed. I just grew numb and mute about what was going on with me<, as well as things that were going on around me. It was like I was having an out-of-body experience. Like I’m just someone looking in on total chaos happening in front of me and not knowing how to stop it and change directions of the course that I was going down.
- Depression – This is a big one… something that I still deal with today. I’m coming to terms with the fact that I have to live with this disease for the rest of my life, or until a cure is found. I start going through so many emotional changes... I’m depressed and stressed out and anxious all at once, because I’m still experiencing all these symptoms that are happening to me, with no idea of when they will go away. I was just told that it takes “time.” And right after I was diagnosed, it felt as if I didn’t have a lot of time to get better.
- Denial – Now, my mom is a nurse, my husband is an EMT/Firefighter, and I watch the news… I’ve heard about people being misdiagnosed with different illnesses a lot. So I’m wondering if I even have MS. A few months after my first big relapse, that got me diagnosed, I had another flare, but this time worse. How can it be MS, if I’m on medicine for it now? It wasn’t ‘explained’ to me fully (or I just didn’t hear it through all the chaos) that treatments for MS don’t STOP the attacks; they TRY to slow down progression. That’s a big difference. So, I had another MRI, I also had a lumbar puncture (spinal tap) to rule out other things, like Lyme Disease, etc.
- Isolation – So, at one point I finally came to terms that I do have Multiple Sclerosis. What am I going to do about it? I was seeing my whole families lives turned upside down, and I didn’t want that for them. I didn’t want my friends to have to deal with it either… so I pushed people away. It wasn’t to be mean or done because I was mad at them, I was trying to keep them from having to live through this with me. In the beginning, I didn’t know that when someone is diagnosed with MS, it doesn’t just affect him or her, it affects those that surround him or her as well. I already had a good understanding by this time as to what I was going to be dealing with and I didn’t want that for them.
- Finding Others with MS – Once I got over my pity party and stubbornness, I decided I wanted to talk to others who lived with Multiple Sclerosis. I wanted to find out personal experiences. Not just reading scientific information on the Internet. I wanted to know what it was REALLY like for others. So, I once again, went online and was searching for ways to speak with others who have MS. I had just turned 23 two months after I was diagnosed, and with all the images I had seen online, I was very skeptical/scared of meeting anyone “in person”. I didn’t want my first time meeting someone else with the disease to be a person in a wheelchair, I didn’t want to see what was “in store” for me. Not at that time anyway. So yes, I went online, found MSWorld and I now have my second family.
- Fighter – I finally gained support… not that I was ever without. However, there is a difference between your family and friends supporting you versus others who have MS supporting you. I had people reassuring me that what I was going through was normal. That I’m not dumb or stupid for what all I have said/done or how I reacted. It was an acceptance I needed to really give me that boost of confidence and bring out my inner fighter. It’s how I decided that I’m not going to just give up. So, taking the advice I was given, I went out in search for an MS Specialist, and let me tell you, that is one of the best things I have ever done. Having the right health care team on your side, makes such a difference, I can’t even explain it.
- Acceptance – I’ve come to accept my life as it is now. I’m happy, I’m involved with the MS Community being a Volunteer now with MSWorld, as well as Blogging for MultipleSclerosis.net – I have the knowledge about MS now. I stay as educated as I can about MS. And I live my life the best way I can with MS included. Why is MS included? Because it’s something I live with every single day, it’s something I have to factor in to my lifestyle all the time. I can’t just ignore it. So I live with it, and I live the best way I can. Now – I’m not saying I always have a positive outlook on things… because we all have our meltdowns, but for the most part, I’ve accepted what I’ve been dealt with & I won’t give in to it.
I just want to remind y’all that these stages/process… isn’t something that I ONLY went through right when I was diagnosed. I’ve gone through it almost every time I’ve relapsed. Every time a medication I’ve been on has failed. Every time my MRI comes back with more lesions… I go through these stages. Sometimes it’s a few of them and sometimes all of them. There is no telling.
So this is my reminder to everyone that you aren’t alone. I probably left out some ‘stages’ in here – but I do have an MS Memory, so please forgive me for that. But just know that it’s okay to feel the way you feel. There is nothing wrong with the emotions you are feeling and don’t let anyone tell you something different.
At the end of it all, it’s your life. You get to choose how you want to live it. Live it the best way you can and don’t give up. Know that you are never alone. Some people just don’t want to admit that they feel certain ways, but I’m telling you right now, it’s OKAY! If someone wants to TELL you how to feel, TELL THEM where to go… ;)
You can also check out a video I made for the "You've Got This" campaign. Click here to watch.
I wanted to share a song that someone on my Facebook page sent me. When I listened to it and read the lyrics, it was like it was MADE for people living with Multiple Sclerosis.
Does anyone else in your family have MS?