On Wednesday I published a deeply personal post about the first couple of months after getting my MS diagnosis and how I went through the coping and grieving process. Because it was an emotionally charged post, I wanted to balance it out with a post about finding acceptance and the healthy ways I’ve tried to manage my MS both physically and mentally.
First, let’s get this out-of-the-way: Any changes made you have to want for yourself and they will occur in the amount of time appropriate for you.
Do not let people, myself included, tell you that you have to make changes in a specific timeline or before you are ready.
Do not read this post and feel like you aren’t doing enough to manage your grief or your diagnosis. You are unique and different from me and that’s okay.
You will make the changes when you are ready.
Despite this, there are things I cannot recommend:
- Staying stagnant and giving up
- Engaging in self-destructive behavior
- Refusing to be open to new experiences
In my last post, I engaged in all of the above behaviors at one time or another, so when I say I cannot recommend them, I say it from personal experience. If you find that you are engaging in one, some, or all of these behaviors, it means you are still working through your grieving process.
That’s okay, but ideally, you want to move beyond the grief at some point because it brings a personal peace that makes the pain and frustration more manageable.
So what does it mean to transition into acceptance?
Acceptance is looking at yourself and saying: “Yes, I have MS. I have it and it affects my life in ways I wish it wouldn’t.” Acceptance is not about giving up or allowing the disease to define you but embracing that it is now a part of your life.
It is about being honest with yourself and saying: “this is my new normal. It’s not ‘the normal’ I would have chosen for myself, but it’s the one that I have for me. Now I must figure out ways to adapt this normal to work for me. Not against me.”
When you reach the acceptance stage, being able to make the necessary changes in your life will seem less troublesome even if they are still difficult.
When you hit the acceptance stage you don’t magically transform into some sort of “Pollyanna” or overly optimistic person where nothing bothers you.
Your MS will still flare-up; people will still annoy you; you will still get angry about the fact that you have MS and are incapable of spending the quality time you wish you could with the loved ones, but you may find your frustration levels lowered; your tolerance for minor issues higher; and you are able to push through difficulties longer than before.
Acceptance alone is not a cure or a way to manage the MS, but it is a way to manage stress which can affect your MS. I found that the best way to work through the stages of grief was finding a forward momentum.
Finding what Drives You
At the beginning of my grieving process, I had an epiphany: I had to figure out what my motivation was to get through the diagnosis. This epiphany happened in between bouts of anger, depression, and denial, so not at the end of my grieving.
It was similar to the sun coming out briefly during a cloudy day: bright and refreshing, but still in my memory when the clouds gathered again. That’s around the time that I remembered that silly mantra I came up with:
Today is a bad day, but tomorrow will be less bad; next week will be less worse and next month will be a little better.
My motivation was that with time, I would emotionally and mentally heal from the diagnosis. I didn’t know when that was going to happen, but it was going to happen because I would eventually get used to the diagnosis, have to work through a course of treatment, and then find a way to continue living my life until the next stage of the disease presented itself.
In a nutshell: because I couldn’t stop the passage of time and all that comes with it, I would have to be prepared to deal with the inevitable whether I liked it or not. I wanted to be prepared because that was part of my personality type. I hate being caught unprepared. What moved me forward was finding the motivation to work though the grieving process.
My motivation changed as I went along, but this is how it evolved chronologically:
- I want to figure out what I am going to do before the next MS stage so I can appreciate what time I have left
- I want to get ready to start a family so I need to deal with this so I could spend my best years with a child
- I want to be the best mother I can so I can enjoy the time I have with my son
Now, I had accepted my MS long before I got pregnant with Jai, but I still have to find ways to stay motivated to keep me moving forward and not slip back into anger or depression for an extended period of time.
Acceptance is NOT Giving Up
Just to repeat, accepting the diagnosis is not about giving up or giving into the disease. It’s not about forgetting what I am losing or being in denial over the whole situation.
It’s about taking responsibility for my own life and saying that I am going to push through this and make the best of what is an unfortunate situation.
Getting to that stage is important, but sometimes you need to do a few things before you get there.
You do not need to finish the stages of grief before looking for ways to manage and accepting the diagnosis. In fact, I found that looking around helped move me through the stages.
Just like my last post – I am not personally making recommendations or advising you do anything in particular. What you will find below are the ways I moved forward before I accepted my disease. I believe that by exploring each of these topics it helped me find normalcy and work my way to acceptance.
Finding your Tribe
One of the recommended things a person can do after receiving a bad medical diagnosis is finding a support group of some kind.
I am shy and when I was going through my isolationist stage of grief, the idea of going out and attending a support group was abhorrent to me. It’s a great means for social connection and contact, but I just couldn’t do it because I was too scared.
I was worried that my health wasn’t bad enough and I wouldn’t be accepted.
The idea of physically attending a support group also played into the concept that I would be overtly accepting my diagnosis which was something I was not ready to do.
Instead, being the age of the internet, I found support groups online. They were less structured and more random than a physical support group because they were Facebook Groups tailored specifically for people with MS.
I found the digital space safer for me because people didn’t see me and couldn’t judge me. I could participate if I wanted to, but because I wasn’t physically exiting my space, I could still carry on with the notion that I was a casual observer into the world of MS.
Going into these digital spaces made me feel safer. Some of the groups were more negative in nature, focusing solely on the negative aspects of MS while others sought to promote healing and healthy mental health. I shuffled through a few groups until I found the ones that provided me what I needed: a chance to observe or participate in the way I wanted to, free of judgment, balanced with realistic thinking and positivity.
It was in these spaces that I passively learned more about MS, especially since I was in denial. I was seeing inspiring stories of people whose lesions disappeared, who had major victories over being able to walk again after several years, and tips on how to manage low-fatigue days.
In short: these groups helped normalize MS for me and show me that it wasn’t as scary as I thought it was back in High School.
Attitude Shift: Disabled or No?
According to the ADA, MS is considered a disability. But does that mean that I am disabled?
Yes, technically I am. I had to eventually be okay with this reality, but I would have to say that it’s one aspect of the disease I am still not able to accept.
I feel that not accepting my disability status should be an exception at this point in my life.
That being said, there is nothing wrong with accepting the disability nature of MS. I honoring the more limiting aspect of my MS more often, but I still refuse to fully accept myself as disabled.
Mental Health Care
Quite possibly the most important thing I did for myself was finding a therapist. I flirted with therapy here and there with mixed results prior to my diagnosis, but I finally asked my neurologist for a recommendation so I could start tackling the darker parts of the grieving process.
I have been seeing my therapist for the past 3 years or so and they have really helped me to see through the anger and depression stages of my grief. They helped me work towards finding healthier solutions to the situation and be more self-compassionate.
Ultimately, it was learning that I need to accept that MS was out of my control, so why was I stressing so much about trying to control it? The stress was damaging and causing flare-ups and taking away precious time from Ash and Jai. I worked with them to change my perspective and outlook. It took nearly two years of really intense work to get there, so it wasn’t a quick change.
As an aside: I cannot stress the importance of finding a mental health professional to help you through the grieving process. Do not feel ashamed if the first, third, or even seventh one you see does not fit. Find one who will work with you, validate your feelings, and find ways to help guide you through the process. Ask your neurologist or GP for a recommendation if you aren’t sure where to start.
Having a Laugh
This may not be for everyone so you may want to skip over this section, but I found that having a sense of humor, particularly a dark sense of humor helped push me forward through my grieving process.
There is some science behind having gallows humor: it helps make what I am dealing with more manageable, but more importantly, it puts others around me at ease. While I am not responsible for their feelings on the matter, I do struggle with feeling like they are afraid of saying something insensitive around me.
Making dark jokes helps relax others and put me in the right frame of mind of how to actually approach the disease: I can’t change the situation so rather than stew in a dark place over the lack of control – I may as well laugh about it.
My Favorite Example:
- When Ash and I started family planning I went to the doctor’s office to see their nutritionist. I had all these high ideals that I would be vegan once I got pregnant (I ended up eating whatever Jai would allow me), so I wanted to come up with some meal plans to make sure I took in all the appropriate and necessary nutrients. I had issues with cholesterol and that’s all this nutritionist wanted to focus on. Not vegan eating, not preparing for pregnancy, what we were going to do to lower my cholesterol. This was our conversation:
Me: I am thinking about being a vegan when I get pregnant and wanted some dietary tips.
RDN: You have really high cholesterol and we need to get that under control…
Me: Yes, I know. But I am not here for that. I want to know what my meal plan needs to be if I do veganism during my pregnancy.
RDN: You should be concerned! It’s so high. Here are some foods you should consider to lower your cholesterol…
Me: Look. My cholesterol isn’t what’s going to kill me. My MS is going to kill me first, so I really don’t care about cholesterol. Do you or do you not have any advice for a possible vegan diet when I get pregnant?
RDN: **sputters** Well, you’ll need some beans for protein […15 minute discussion of protein sources and portion sizes..] and because your cholesterol is so high your should really avoid coconut fats…
Me: [inward eye roll] Okay.
She wasn’t sure how to handle it but don’t feel bad for her. She was a terrible nutritionist because she refused to listen to my questions. I had a solid laugh over the whole situation and it helped relax me in a stressful situation.
In the Moment…and Moving Forward
Ultimately, MS forces a person to live in the moment or be mindful.
So while I may get frustrated over not being able to remember all of the precious day-to-day things Jai does like other parents because of my memory issues, I find that just looking at him and appreciating the current moment, not that I won’t remember it, not the ones in the past, but the one I am currently in it gives me peace about the situation.
I forget and live outside of the moment for the deadlines I might have or things I need to do, but when I get out of sorts and frustrated, I remember that I need to just be and exist where I am at. Life is out of control and it’s not my place to control it.
By appreciating the moments I have now, it will allow me to live a fuller and more pleasing life because I didn’t let MS get me down when it had a chance.
Things aren’t going to get easier, in fact, they may get harder as I get older, but I hope to meet those challenges with acceptance and be able to look back at my life with minimal regret.
What are some of the things you’ve done once you’ve accepted your diagnosis? How has it made you feel? Leave a comment below.
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