Talking to others about MS

There comes a time to reveal a difficult diagnosis to those outside the immediate family.

This can be a stressful or liberating experience. Friends may have suspected all along or been completely surprised by the information shared with them.

Revealing your diagnosis is an intimate act because you are sharing something personal with a friend in the hopes they will be supportive.

Because we cannot control others’ reactions after such a revelation, waiting until you are ready to talk is extremely important for your emotional health.

When to Say Something

First of all: you do not owe an explanation for your health. If you choose to divulge your diagnosis, that is a decision only you can make. Do not let anyone else force the matter from you.

If someone is visibly unwell and been so for a while, it may be harder to keep diagnostic information from others, particularly if treatment starts. It may be a relief in telling others because there is finally some information to share, but don’t be surprised if holding onto that information a little longer is more important.

While there might be a temptation to tell people immediately after the diagnosis, waiting until the information is processed is best. It allows for better preparation both with reactions and questions. Knowing which friends can handle the information with care and sensitivity helps in deciding who gets what information first.

But there may be some friends, despite waiting until you are ready, that may scale back the friendship because they don’t know how to handle your diagnosis. This hurts, but being ready for it will help mitigate the pain versus being blindsided. I made this mistake a few times and each time I wish I had waited to reveal my diagnosis or not bothered at all.

Only you will know the right time to divulge information, there isn’t a magic number or “best by” date to tell others.

What to Say

It isn’t about what is said, but how comfortable a person is with the information. Remember to only provide enough information to a specific comfort level with the individual friend.

There are levels of each friendship: some friends have VIP access to the most intimate details,  while others have extremely limited access to important information. Deciding where a friend falls on that scale will determine the extent of the conversation.

It’s okay to say “I have something going on” and leave it at that if they ask for details, and it’s also okay to explain in simple terms what it means to have MS. Let their reaction guide the depth of the conversation. If they seem genuinely interested, provide them with as much information as they can handle. If they seem to brush it off and don’t know how to handle the information, then it might be best to end the conversation and move to a new topic.

What to Expect

In most social situations it is easy to pre-emptively determine a person’s reaction: happy news about a puppy? Celebration! Sad news about a favorite actor dying? Let’s get some wine and talk about their movies.

But when it comes to personal medical news, friends will surprise you with their reactions. A cold and indifferent friend might open up to be extremely caring and compassionate; and a vivacious, wears-their-emotions-on-their-sleeve friend might become cold and non-receptive to the information. Unfortunately, there’s no way to tell which friend will behave what way, so waiting until being prepared for both reactions (and everything in between) is the preferable course of action.

You cannot control a friend’s reaction, so walking into the conversation with lowered expectations will help ensure your emotional peace of mind.

This sounds cynical, but it’s about taking a more realistic approach. Don’t expect a friend to react in the way you specifically want them to: if you want them to reach out and show loving-kindness towards the information shared, that is putting too much responsibility on them. While it would be wonderful if they reacted in the best way possible, it’s not their job to do so. Managing expectations will lead to fewer hurt feelings and help preserve your emotional well-being.

If the friend reacts in a preferable way, then it will be a wonderful surprise. If they do not, then it provides an opportunity to reassess the depth of the friendship or what they might be going through (they may have something going on in their life that they aren’t ready to reveal).

Answering Questions

The next step will be dealing with the questions. The best policy is to be straightforward and honest.  You have the option of saying “I am not able to answer any questions at this time,” or “I will answer any of your questions to the best of my ability.” Stick to what is comfortable.

I am an extremely open and honest person, so if someone asked me questions about MS, I will answer them to the best of my ability and tell them ‘I don’t know’ if I am not sure. I keep being diplomatic and understanding in mind as well: sometimes people don’t realize how personal a question might be when they ask it.

If they ask an uncomfortable question or one that cannot be answered, simply say “I can’t answer that,” or “I don’t know, but I will look into the answer for myself.” Do not feel guilty for providing this sort of response. It’s your body, your information, and your decision to share what is comfortable.

Manage expectations regarding the questions as well: there may be a bunch of questions that are insensitive or the friend doesn’t want to ask any at all. Being prepared for either and everything in between will help your emotional well-being.

Understanding Insensitivity

There’s a good chance that someone will attempt to be sensitive and say something completely insensitive.

While you may be experiencing intense emotions surrounding the diagnosis and need your friend to be sensitive, if it’s an important friendship to you, take a moment to reflect on the comment and the intention behind it. Chances are they are at a loss and simply do not know what to say and responding to what they believe to be socially acceptable. 

While the person dealing with the diagnosis is in greatest need of sensitivity and compassion, try to remember compassion for others at this moment. Keep this mantra in mind: friends are responding the best way they know how; they don’t mean anything malicious by it, and I love our friendship despite this.

If a comment is unintentionally insensitive there are two options: gently inform them about the insensitive nature or let it go and look at it for what it was, misplaced goodwill.

Some people will be purposely insensitive and how you deal with them is completely different. If you suspect that a person will be insensitive, it may not be a good idea to let them know directly.

A personal story of extreme insensitivity: Several years ago, Ash had a friend over for the day. This individual had been going through a tough time and had too many drinks while hanging out with us. I was working in the kitchen on dinner and this person confronted me with a scenario: would I prefer to have big breasts and MS; or have small breasts and be completely healthy? I was speechless at the inappropriate nature of the question and sputtered a ‘healthy no matter what it took’ response.

I later emailed the individual about how offended I was from this confrontation and even said I did not expect an apology from them (they do the ‘sorry you think I offended you’ non-apology). I explained that I understood they were drunk and not in control, so I was effectively letting them off the hook. Instead, they lashed out further at me and gave me a hurtful non-apology.

Not only had they disrespected me by talking inappropriately about my illness and my body, but they disrespected my desires to move on from the issue. 

I still interact with this individual, but I have learned that they are incapable of taking responsibility for their actions or have the depth of sensitivity that should be expected given their age. Interactions I have with them are limited in nature because they still are insensitive towards me.

The positive aspect of this episode? I am able to say to friends that this individual set the bar for what I deem acceptable conversation/comments about my MS. Provided these friends don’t sink any lower than that comment, I won’t be offended.

Needless to say, we’ve spent plenty of time laughing at this individual’s expense.

And I recommend this approach.

If someone says something insensitive either unintentionally or intentionally, say something if it hurts (I don’t regret informing this individual about their behavior despite the response), and try to move to a place where you can laugh about it. Laughing defuses a lot of situations and helps you move forward too.

Because an MS diagnosis is a lifelong thing, there will be plenty of opportunities for people to be insensitive. Focusing on the episodes of blatant insensitivity is a better use of time than focusing on the unintentional insensitivity. Guiding a good friend through the process will help them with future interactions.

After the Talk

There are three directions a friendship will take after revealing a diagnosis:

  1. Lose a friend
  2. Indifference to the matter
  3. Draw closer together

This is more spectrum because a friend might draw closer while appearing indifferent or they might be indifferent and slowly drift out of the social circle. I’ve had all three things happen to me after I started revealing my diagnosis and it’s not an instantaneous occurrence.

I can’t speculate on the perspective of friends who drifted away from me other than my need for isolation during the grieving process most likely played a role. I can’t expect them to want to stay if they were doing all the reaching out and I couldn’t reciprocate.

I am the kind of person where I prefer indifference to the matter. I appreciate friends who want to draw closer and I will count them as wonderful people who help make my life richer through their presence, but I also like my MS being a non-issue so it doesn’t feel burdensome to others.

My attitude is this: as long as friends are aware of my MS, that’s fine because I can use it to explain why I am too worn out to spend time with them. I don’t want them to feel obligated to do anything beyond understanding my need to rest.

How did talking to friends about your diagnosis go for you? Do you have any fun disclosure stories? What recommendations do you have to ensure these conversations go smoothly? Comment with your thoughts below.

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Photo Credit: Michelle Melton

3 thoughts on “Talking to others about MS

  1. kat

    This is a lovely post! My mom has a lesser known autoimmune disorder, so she is constantly educating people on it. She’s a very no-nonsense person and doesn’t care if someone chooses to not understand. But I especially liked this because autoimmune disorders run in my family, so I know there is a good chance I will be diagnosed with something one day. I think about this often and wonder how I would tell people about it. This is a wonderful guide to starting a conversation!

    • MS//Mommy

      I am glad that this could help! I am sorry it took so long to respond to your kind words. Hopefully, you will never get diagnosed with an autoimmune disease because it’s a pain to deal with (but manageable). There are a lot of great resources out there and any education your mom can do will help spread better understanding.

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