Accepting the Unknown
As most of you know, I’m an MS Advocate, Blogger and also a Volunteer for MSWorld… So I’ve had people come to me asking how I dealt with my diagnosis. I’ve actually had people who don’t even have MS just flat out ask me, “How do you do it?” That question is not an easy one to answer.
So, I thought I would write an article about the emotions a lot of people go through after being diagnosed, myself being one of them. Now, keep in mind, there is no ‘specific order’ in which you deal with each emotion, because it varies from person to person. This article is so that all of you know that you aren’t alone in the way you feel and there isn’t anything wrong with your mind set after being diagnosed with MS, or any other chronic illness.
So I’m going to list the ones that I went through – I’m not sure it will cover everything, but I hope that in sharing my ‘diagnosis process’ will in turn, help all of y’all.
- Confusion: I know that a lot of you knew what Multiple Sclerosis was when you were diagnosed and what it entailed but I didn’t have a clue. I was 22 at the time and had heard of MS, but didn’t know what it was, how it affected people, etc. So as I was told, “You have Multiple Sclerosis.” I just thought those two words through for a bit before asking my doctor exactly what it was.
- Once he explained this to me, I thought okay… Now how do we Cure it? But as I know now, like everyone else reading this, there is no Cure for MS.
- Worry: I’m not sure how everyone's own thought process went, but I was instantly worried. However, my main worry wasn’t for myself directly. I was worried if it was genetic, if my two boys could possibly get MS, how my diagnosis was going to affect them with my personal capabilities. Now, I was in really bad shape when I was diagnosed and I didn’t fully understand that I could ‘get better’ with steroids, therapy, etc.
- Relief: When I explained this to my friends and family when they asked how I felt, they were shocked to hear me say relief. Because, how can I feel relieved when I just found out I have a chronic illness with no cure. Well, depending on how long you go through the ‘getting answers’ phase (mine was about a year) you have read things that could be the cause of your symptoms that you’re having. So I was relieved that I had an answer and that it wasn’t going to be a continuous guessing game of what is going on with me… do I have a brain tumor, etc.
- Sad/Depressed: I just stated that I was relieved, how come I’m now sad/depressed? Well for one, all of these ‘feelings’ aren’t necessarily in order with how I went through it. However, once I went back home I did some research, as well as my husband and mother. So all of this information was just being slapped in my face and I didn’t want to go through everything that I was reading. I didn’t want to believe that I was going to go through all of this.
- Denial: Once I learned more and more about what Multiple Sclerosis was, the more I questioned my diagnosis. How are they for sure that I have MS? All I had was an MRI… how can they rule out anything else just by an MRI? There must have been a mistake… maybe it’s just a pinched nerve? I had a lot more questions than that running through my head, but you get the idea. I wasn’t the only one in denial either my family was too. Maybe not full on denial, but just uncertainty.
- Scared: So I’ve learned more and more, I’ve started going through IV Steroids because of the exacerbation I am having… and I’m just scared. The doctor didn’t tell me if the steroids would make me ‘normal’ again… and I just wanted to be ‘normal’ again. I wasn’t just scared for myself, but for my family. It’s hard to have to see the look on my families face while I was going through all of this because they were scared as well, but were being strong for me because I needed their strength.
- Anger: Let me just tell you that I have been told I can be the nicest person ever to people and that they don’t want to get on my bad side, because I have a temper. So while I’m going through all of the steroids, therapies, and all these other crazy emotions… I start to get angry. Why me? What did I do? Then I was just angry all together. I was angry with my body, I was angry with MS, I was angry with doctors… you get the idea. I was just flat out mad and I couldn’t stop from being angry.
- Contemplative: This is a hard one to explain… because I was just everywhere with my emotions. I started envisioning my future, what it’s going to be like, all of those things. I ended up telling my husband that if he wanted to live a normal life that I would understand. That I didn’t want this for my family. It’s one thing to be diagnosed with MS but it’s a whole other thing on how it affects your loved ones. I felt like I didn’t want to hold anyone back. I guess you could categorize this feeling into depression/scared, etc. But I felt like I needed to make it it’s own area – because it’s hard to not be contemplative about your future. Am I going to be able to work? Am I going to be able to continue with my hobbies (fishing, hunting, etc.)?
- Isolation: I think that this emotion can go with others I’ve listed as well. But like I stated above, I didn’t want to be a burden to my loved ones. I didn’t want them to be held down because of me, so I started pushing people away so that I couldn’t be blamed for anything if they grew to be angry towards me later on down the road. But I also started going this because while I was trying to recover, I noticed that not everyone was sticking around with me for that journey. So I had the thought process of, “I’m going to push them away on my own terms rather than just be isolated even more.” It didn’t work out for everyone – but I also learned who was going to be there for me through everything.
- Grief: It’s hard to explain on why I felt grief because I didn’t lose anything/anyone. But in a way, I felt like I was loosing who I once was and in a way, it’s true. I couldn’t just ignore my MS and pretend that I was the same person before I was diagnosed because that would be a lie. So I had some grief for loosing the person I once was. But later on I did realize how much I still have and how much I have grown.
- Hope/Acceptance: I did gain some hope and acceptance after a while. Once I learned more information, had some improvement in my symptoms and mobility, I started to finally have some positive thoughts about my future and my MS. This is also what led me to finding other people with MS. Even though I had started to accept my MS and everything I didn’t want to go SEE anyone with MS because I was still scared. Thought that if I saw someone who was really bad off that I would be looking into a mirror as time went on. So that’s how I found MSWorld. Gotta love technology these days and how we can communicate with one another from all around the world, brought together by horrible diagnosis but at least gaining friendships from it.
- Stubbornness: Anybody who is real close to me will tell you just how stubborn I am. I don’t usually admit that very easily, but in this case it’s working in my favor. During all the ups and downs after being diagnosed, getting better then having an exacerbation and ending up worse than I was from the previous one… I had a lot to overcome. I figured that since I’ve always been a fighter & stubborn, that I wasn’t going to stop now.
- Positivity: How can I be positive after going through the roller coaster ride of being diagnosed? Because the opposite of positive is negative and I’m not a negative person. I have done my research and educated myself all about MS and I see how much the MS knowledge base has grown over the years, so I feel positive because at least we have options… at least we have life… and at least we aren’t getting thrown into a hot bath to see if we have MS or not like they used to.
- I have this in my bio on MSWorld – and I wanted to share: “MS has taught me many things but most importantly it has taught me, if you live your life with negativity and spite… then that’s all you will have surrounding you. By embracing life for what it is, and making the most of everyday, you know you are doing everything you can. Not only for yourself, but also for those surrounding you to make this life the best it CAN be.” – Ashley Ringstaff
Now let me just say that there isn’t really a ‘time frame’ in which you go through these emotions or that you will go through all of them I have listed or you might have some emotions that I don’t have listed. I still go through some of them 4 years later but at least I am more educated on the matter than I was at the beginning. These emotions never really go away, for me at least, they just aren’t the biggest factor in my feelings each and every day.
I’ve had people tell me how proud they are of me because of how quickly I accommodated my ‘new life’ and didn’t linger on certain issues for too long. But I didn’t really have a choice in the matter. Like I said, our situations are each different. I had two little kids who needed their mom. They were scared, confused and everything else. I couldn’t even tell you where I would be had I got diagnosed years before I started my family. It’s also really scary to think about what I would be like now, or how I would have handled everything thrown in my lap had I not had the support from my ‘new family’ at MSWorld.
This is why I blog, because I don’t want anyone to go through this alone. Or feel like they are the only ones feeling a certain way. We are all only human. We are all our own individuals and we all live different lives. But as an MS Community, we come together as one and that’s what’s important.
My writing is therapeutic for me. I’ve always loved to write since I was little. I did it as an outlet for my feelings, emotions and thoughts. While that is still why I write now… I also do it because of the encouragement from everyone who reads my writing. For all the comments, messages, etc. I get from other people with MS stating how my writing has also helped them. There aren’t words for how that makes me feel. While I wish that so many of you didn’t experience the things that I talk about, I’m thankful that we all have each other. I'm also thankful to MultipleSclerosis.net for having me as a Blogger for their site :)
How do you feel before getting an MRI done?