My friend (MSINTHEUS – on the Barts Blog) has sent me this and I agreed to publish it on theMSguide.com blog. It is an interesting take on reasons why you may not want to disclose your diagnosis. Enjoy. Any comments will be passed on as they need to remain anonymous.
Thoughts at 5 years post diagnosis
(aka what I wish I knew then, and what I want newly diagnosed people to know now. This post is an adaptation of my original post. With apologies to most readers for my unimaginative American cursing).
Introduction
When you are diagnosed with MS, you get a lot of pressure to tell people about it. That pressure does not relent. This month I have reached the five year mark since the MRI that led to a rather quick diagnosis and one thing that hasn’t changed is the unreasonable pressure to disclose to friends and family. In my case this message was continually applied by a well meaning social worker, by friends, by my doctor.
Don’t believe me? Start with the first place people will be sent to. The NMSS site for the US states: “Disclosing your MS to those closest to you — particularly those who know you well enough to know when something is wrong anyway — is the best way to rally the support you need to begin the coping process.” UK is a bit less pollyanna, stating right there on the bloody homepage: “If people know about your MS and how it affects you, they’ll be in a better place to offer support if and when you need it,” but the message is the same.
Tell people! They’re just waiting to offer support.
Not so much, people.
I am here to tell you don’t do it. Or at least think carefully before you do. It is a bell that can’t be unrung.
If you, like me, live in a real world where people do not polish turds then you might welcome a different perspective, with data backed by science. So here is a handy guide you won’t get anywhere else.
Findings
Having had significant experience with market research throughout my career, as well as interpreting and explaining medical data, I conducted a carefully set up study which comprised of one carefully chosen subject: moi. And of course even a scientific hack knows you need at least two studies to prove a thesis so I have included the experience of a friend in this analysis too with the same conclusions. The bulletproof scientific process* was as follows: I walked through every single person we had told and reviewed a few sentences on how they reacted in the moment, and over time. We then looked across these reactions and bucketed those that were similar until we found three clear themes. Therefore in this study I have come to the scientific conclusion that all people you might tell will react in one of three ways:
- The supportive, understanding person
- The weak person uncomfortable with human illness
- The toxic person who will sense weakness and take advantage
Oh, you’d like examples? I’m so glad you asked. Here are some examples of each:
Examples
Examples of reactions from supportive, understanding people
“I love you and I’m so glad you told me”.
Later asking “How are you feeling these days” and “would you like some more tequila” in the same conversation.**
Offering to accompany you to treatment, or to the doctor. Doing so for the nth time after you’ve said no each time.
Putting important things like MRIs or treatment dates on their calendars without your knowledge and magically knowing just when to reach out to see how it went.
Talking to people you know and finding out who else has this, and learning more about this weird disease that unfairly targets the super young.
Sending you random “you got this” cards, or a plant, or a “best friends” mug, or a “fuck you, ms” shirt for no reason at all
Without any fanfare, using the Facebook fundraiser to raise money for MS research when it’s your birthday
Randomly sending you articles of new science that may help. (Note I said science peeps – not yoga poses or kombucha recipes).
Not treating you like a delicate flower, and still coming to you with their own problems – or concert tickets, because we all have our shit, and we all need a safe space to forget it for a bit.
And if you really want to know who your friends are wait until MS is in the news, like when the Regeneron covid antibodies were approved in the US for prophylactic use on high risk individuals, or when a celeb is diagnosed. The people that text you that article asking “can you get this”? The people that learn about celeb diagnoses, and immediately start following them for you on Instagram trying to get a connection? THOSE are your people, peeps.
Examples of weak people who are uncomfortable with human illness
These people are actually very easy to spot in hindsight, unfortunately they’re usually people you thought would fall into bucket one, and then they disappoint you with their cowardice and inability to help due to their own personal discomfort. The closer they are to you, the more it will hurt.
Abandonment from a family such as a parent or inlaw who falls into this category is particularly insidious and painful, which is why I strongly recommend waiting to disclose if that kind of reaction will do more harm than you can handle at the time. Remember, stress makes MS worse so if telling someone will worsen your health then definitely don’t do it!
These people are very easy to identify in hindsight. Common reactions include:
Saying all the right things on the phone, then never speaking to you again.
Suddenly stopping inviting you to things
Avoiding you
No more texts, or calls, or emails – about anything
Ghosting you
Sensing a theme, peeps? We did too.
Examples:
I had a friend who I had a lot of fun with and thought was close to who I told. She was nice and talked to me and would check in on how I was feeling, but she stopped inviting me out to things. I lost a big social outlet, at a time when I desperately needed some fun.
I reluctantly told some in laws, after years of telling no one on that side of the family, because their resentment at my perceived excessive Covid precautions made it necessary and I did not want them to take my refusal to get together personally. After hearing the news on the phone and asking some questions, the phone call was cut off due to my brains’s failure to properly estimate my phone’s sad battery capacity. I kept my promise to follow up as soon as charged but that call was met with a text saying they were at lunch and would call me another time. Which of course never came. It was radio silence from that point on. No “I can’t believe you’ve been going through this and we didn’t know, how can we help?” No, “I’m so sorry this happened to you, thank you for telling us.” I was even ignored at in-person events from then on, they even snuck into Manhattan without telling me and made plans to see my husband behind my back! While I know it’s not personal, that doesn’t stop me from feeling deep pain and hurt. It’s hard not to take something like that personally. I very much wish I had never said anything.
So, if you – like me- think you will not enjoy the cold shoulder, or being treated like a leper, by someone who is supposed to be your family or your friend, you might want to hold off on the disclosure. MS is stressful enough without other people hurting you and causing you stress and grief because of their own unprocessed discomfort with illness.
Examples of reactions from toxic people who will sense weakness and take advantage
Some of these have happened to us, and some of them outside the “study”. But these are all real examples, and they do happen. These people exist, and they actively and intentionally will do things to your detriment. Examples:
An employer may cite “performance reasons” for an eventual termination (this has happened to people, be VERY careful before disclosing to an employer or a friend who is also a coworker. The misinformed make damaging assumptions)
A landlord suddenly raises your rent when you cite diagnosis and being in the hospital as the reason for the ONE TIME in years that you were late (this happened to a friend). Sometimes you just have to be smart and aware. Your weakness is someone else’s opportunity.
A spouse may realize you may be dependent on them one day and may use that knowledge to become abusive, cheat, steal, generally mistreat you in other ways they would not have tried had you not been weak, or all of the above. Sad, but it happens.
A parent disinherits you, stops speaking to you, or acts in other ways that actively cause you harm. This happened to both myself and someone I know. All the books say your parents want to help, especially when you are still relatively young, but none of the “helpful resources” out there that I have seen even remotely acknowledge that not everyone comes from perfect families and toxic narcissists can be found amongst parents, too. In my case the disinheritance and immediate communication cutoff was promoted by a request for a small loan I foolishly made, then the actions were rationalized by made up fabrications of things I had never and would never do. Yes, people! If you have MS you officially have the most expensive disease in the world. According to most research 70% of people are no longer employed after ten years. Yes, a diagnosis is shocking and life changing and you may need some help with unplanned hospital bills or time forced off work. But how dare you ask your parents for any financial support! I mean, seriously, how selfish can you be?
A note on children
Everyone says “tell your kids right away!” As with all parenting advice, this is right for some kids, and not for others.
MS may be a life changing crap diagnosis but it doesn’t have a magic wand that magically takes away your instincts as a parent. Keep being a parent. That means doing what you think is best for YOUR child. Think you want to tell them? Great! There are TONS of resources to help you with that. Read them, decide for yourself if they make sense. Use them, or don’t.
Don’t want to tell them? You know your kid best! In both myself and my friends’ cases we were under great pressure to tell our children. We had young, anxious kids, who craved and needed normalcy. People didn’t understand. “They should know”, said “experts”. In both our cases we held firm, and parented as we always had. In both our cases we were met with great shame and pressure to make a different decision.
When each of us finally told our children, they were old enough to handle the news. We also both realized there is a lot less anxiety that comes with “I have this and I’ve taken this medicine for three years, and so you can see that I’m ok, right”? vs “I just learned I have this and they’re advising I take this medicine and we’ll hope it works”. The latter would have been way too scary for my child. Telling her when she knew everything would be okay took the fear out of the information because I waited until the unknown and unpredictable was known and predictable. Turns out, predictably in their parents is a very reassuring thing to kids. Who knew! I stuck to my guns, but it would have been much nicer if I didn’t have so much damn pressure and even in some cases shame from people for not handling things the way they thought I should.
Conclusion
In conclusion, before you disclose, THINK. Think about why you are telling that person? What do you hope to gain? What of the three buckets will they fall into? Everyone assumes everyone falls into the first bucket, and for many people most do.
But we’d be doing people a huge disservice if we did not acknowledge that this isn’t true for everyone, for some people reality does not reflect this and that is why you have me, to tell you the unfiltered truth. Really think about who this person is, and how they might react. Will you gain more than you may lose? Are you ok if they end up falling into a different bucket than you had hoped? Are they in a position to cause you real harm if they fell into the last bucket?
Please seek out advice, as needed. But take all advice with a grain of salt. The reality is that no one likes to talk about this unpleasant stuff. And MS has a tendency to bring out the unpleasant in people.
So if you remember only one thing, remember this: NO ONE GETS TO TELL YOU HOW TO “DO” MS.
However you decide to handle it, that is the right way to proceed.
SCIENTIFIC FOOTNOTES
*Because I believe in writing responsibly, I feel compelled to say out loud this is sarcasm, for those of you daft enough to have not yet figured that out. Despite the obvious (please let it be obvious) use of hyperbole for a little fun the conclusions, however, are real, as unscientific as they may be.
**We may have been dealt a shit hand but FFS we’re not dead, people.
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