People’s Reactions to a Public MS Diagnosis

When I decided to make my diagnosis public I didn’t realize how many people would reach out to me. To be honest, I was a bit shocked at the number of incoming public & private messages. No one wants to comment on my races or food prep as much LOL. Some of the messages warmed my heart, some upset me, some made me cry happy tears from the support and some made me really, really angry. I think a broad spectrum of reactions & feelings is ok due to the volume of sentiments I received. I know I’ve made my life quite public when I made the decision to share my health journey with others. My goal in being open was to gain support from my tribe & to hopefully help another newly diagnosed MS patient in the future as they navigate their journey.

After receiving something that can be perceived as bad news there are several different ways people react. I’ve been grouping them into buckets to process where to spend my time in responding. It’s been overwhelming to write back to everyone. I’m definitely the kind of person who wants to make sure I’m responding though since someone has taken the time to reach out. For me I’ve had to choose who to respond in depth to and who to just thank and file away.

First off you may have noticed that I called this perceived bad news. If you have been following my blog or social media for a while then you know I’m uber positive and optimistic at how I attack life. I think it’s apparent by how I call MS my new sidekick or a new obstacle to tackle or a new way of living and something that I just have to deal with. It is how I personally need to deal with my diagnosis. I flip things immediately to the positive because that is how I “get through” things. So keep that in mind as I categorize those who have reached out and my reactions as such.

The objective of this blog post is to make others aware of what they can potentially expect if they announce a diagnosis and also to those who hear a diagnosis and want to reach out. Just think about your audience whenever you say something about someone “going through” something vs. what you would want to hear. Grief processes are very very different for everyone and we all deal with things differently. So please just keep in mind how you choose to react when you reach out to someone going through something in the future. Take cues from them. Overall I’m beyond grateful for the support, I’ve voiced my concern on what I don’t want to hear and have been thankful for every single message sent my way.

Those Who Know Me From Social Media

These sentiments just basically echoed everything I put out on social media. “You’ve got this!” “If anyone can handle MS it’s you”, “You are going to continue being the amazing Alpha Female that you are”, etc. These statements confirmed one thing for me that my tribe on social media gets me. Those that love to see what I post on a daily basis love me for my positivity and optimism and echoed it right back. Thank you for all your support and boosts of uplift. I can’t even begin to thank everyone for the support you gave me over the past month and a bit. When I’m blue and ask for pictures of my Instagram #theface warmed my heart so much!

The Opinion / Advice Givers

While some of this advice was useful I got a broad spectrum of opinions & advice on how I should tackle MS. I’ve read all the messages and filed things under I should look into that or woah that’s crazy who are these people? I’ve been so grateful for all the articles & book suggestions. I’m even reading Wahls Protocol because of several messages. I think it’s just the volume of messages I’ve received that were overwhelming but no one how many private messages I’ve received. I’ve bookmarked over 100 links to read. Everything is being examined with a grain of salt and slowly being processed. The advice-givers who told me I immediately needed to get acupuncture or look into this specific treatment were scrutinized and filed or deleted. I have to take everything into consideration and then do what my team of professionals and I believe is best. I’m grateful for these messages despite how overwhelming they became.

The Woah Is Me Reaction

These are the ones that angered me and hurt me. I get that in the face of grief the immediate reaction is to say “I’m so sorry” or “THAT’S SO HORRIBLE!” It just made me so mad. I don’t need or want pity. I’m not sorry so I don’t want you to be for me. There are so many worse things in the world that I could be going through. I truly believe that because I’ve gone through having to call off a wedding that this obstacle was so much easier to move into a positive mindset. I’ve already had a massive storm in my life. This is just a new blip. So I don’t need sadness because I’m so focused on being happy. I felt responsible to bring people out of their sadness if that’s what they portrayed to me. I even got messages from people who thought I was dying! To those, I had to explain the severity of my diagnosis. If you don’t understand something please take the time to google before reaching out to the person. I do wonder… do you think someone’s sad reaction is based on them thinking “what if this happened to me?” I think it’s best to look for cues. There are 4 stages of grief: denial, depression, anger & acceptance. I moved to acceptance within the span of one day and that’s what I put out into the world. If you are supporting someone in another phase then perhaps they want the sorry. Me? I never wanted to feel sorry about this 🙂

The Practical Help Offers

These were amazing. I had friends who offered to catch me at races next summer or take me grocery shopping if I was dealing with exhaustion (a symptom). Although I got a ton of offers from acquaintances that I hardly see that said “let me know if I can do anything for you” they are just so vague and non-committal that I would never tell a stranger “hey you know what? Today my hand went numb again, can you pick me off of my condo floor while I cry?” I do love how much support I received on offering to do things for me but a vague offer just came across as very empty and standard like they felt the need to say it vs. wanted to. I know I’ve been guilty of saying this in the past so I’ve definitely learned that in the future I’ll offer something practical vs. something vague and hope they take me up on the offer.

As always, these opinions are mine and mine alone. I have no clue if they come across negatively, not my purpose at all. I just wanted to open up the world of what I went through in terms of people’s reactions to news like this.