With the recent news of a new active lesion and talks about shaking up my treatment plan again following what was possibly my first attack in almost a year and a half, I find myself retracing the first steps I took during my diagnosis process almost three and a half years ago.
Because he felt that the risk outweighed the benefit, in my case, my doctor opted not to treat the inflammation from my new lesion with steroids, but I’ve been asked to keep other therapy options open and in the back of my mind. For now, we’re going to increase my Rebif dosage (for the third time) and hope that this time is the charm. And while I’m not looking forward to the increased pain level when injecting with a higher dose or the fear of facing more adverse reactions, I’m happy with that decision. It’s so taxing to switch therapies and now I’m starting to slowly drift into the realm of “last resort” medications, like Tysabri (which, from what I’ve been told by people who take it, is really fantastic….but can cause a brain infection and kill you).
While I’m content with the direction I’m going, I’m still a little apprehensive of what may (or may not) lie ahead and I find myself, from time to time, having to comfort the scared child that I feel I’ve regressed to.
This is a great time to lean on my support system. This is when they shine. One of the craziest things about living with a debilitating chronic disease is the ability it has to weed people out of your life and plant new ones in. It never ceases to surprise me who comes forward…and who stays back.
Disease makes people uncomfortable–myself included–but if you know or love someone with some sort of ailment, the absolute best thing you can do for them is to, first, educate yourself and, second, just be present.
For those of you who may have recently (or not-so-recently) learned that someone you know is living with (and I want to stress living with–that is, forever) a chronic illness and want to reach out and help, I’ve compiled two lists–one of things not to say and one of things to say instead.
I have been on the receiving end of each one of these, at least once, and I can tell you the ones on the “naughty list” have rubbed me the wrong way every single time. I realize the things on this first list are said not out of malice, but rather the desire to relate or offer comfort. I’m only listing these to save you a little trouble and some tension between you and your loved one. So, here they are.
Things NOT to say (from my own personal experience):
- “I can cure you.”
Or something along those lines. The aromatherapy or miracle diet you saw on Dr. Oz isn’t the answer here. It’s not that simple. Multiple sclerosis has been a mystery disease for many decades with only relatively recent advancements in detection and treatment. You likely don’t know it, but your miracle diet cure for a currently incurable disease insults the time, money, and mental/emotional investments we and our families have put into wrapping our heads around this.
- “My _____ has/had MS…”
…followed by something like: “…and they were totally fine until one day they woke up and could no longer function” or “…and they died.” And that’s it. No other context or direction to a productive conversation. We know this is you wanting to relate to us, but comments like these are the ones I fear the most when the topic of this disease comes up. We know the weight that the label carries. We know we can end up in a wheelchair. We know about the “complications” of MS (bedsores, choking, infection, aspiration pneumonia, respiratory problems, pulmonary complication, suicide). We just don’t talk about them. I do my best to keep things upbeat and positive in anything I post here or on my social media, but that doesn’t mean I’m exempt from fear or uncertainty. A comment like this can ruin an entire day, if not longer.
- “But you don’t look sick.”
- “I know how you feel.”
You don’t, though. I recognize this is another form of trying to relate and make a connection, but I can assure you that your definition of “tired” is not the same as mine. I’m not trying to lessen or belittle your own experience when I say this. But it’s on a different playing field.
- “God works in mysterious ways and this is part of His plan for you.”
This comes across as condescending. Just don’t. MS is indiscriminate and random. It’s okay that it doesn’t make sense or have a reason behind it!
- “I’m so sorry.”
This is usually accompanied by wide eyes and a tilt of the head to one side. Don’t be sorry! I can’t speak for anyone else, but I’m not sorry. MS is part of me. Having MS has taught me things about myself and about other people. And I’m grateful for that.
What to say instead (from my own personal experience):
- “How are you today?”
I wrote a little something on this awhile back and I cannot stress enough how important it is.
- “What can I do to help?”
You’d be surprised, and it’s easier than you probably think! It might be running an errand for us. It might be doing a load of laundry. It might be to act as a support source for our caregivers (let’s not forget about them!). It might simply be a request to keep us company. Even if there is nothing needed at the moment, the simple fact that you asked is usually more than enough.
- “You are beautiful.”
We all can use an occasional reminder on this last one, but I can tell you that, for me, it carries different weight, now that I have an invisible disease. It’s easy to feel self-conscious sometimes. We’re always relearning to trust our bodies after being betrayed by them. It’s nice to hear these words coming from a genuine place and to be reminded that it’s true. Our flaws make us beautiful. Our vulnerability makes us beautiful. Our strength makes us beautiful. Know that.
What are some things people have done or said to help lift you up?
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6 thoughts on “To Say or Not to Say?”
Cat, another fine post providing much needed “Do’s and Don’ts” for folks who are having a conversation with a person who has an invisible disease. This is why your blog is so important…education. AND…it is so well written. Thank you…sending much love your way.
Cat, thank you again for providing guidance to people who don’t know how to interact with individuals living with a chronic disease. Whether the illness is seen or invisible, your “What to say” list will help everyone. When a friend or loved one is diagnosed with a chronic illness, it is extremely helpful to do research to understand what they are experiencing. Knowledge takes away fear and opens the door to better understanding and communication. Cat, you are not only a beautiful woman inside and out. You are courageous, positive, strong, and amazing. Sending love today and always.
Love this post! I definitely agree with all the not to say. The one that really gets me is the ‘My__has/had MS’ and the example never ends well. I never understand why they feel the need to tell me… Am looking forward to reading more of your posts. 🙂 x
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Now I feel studpi. That’s cleared it up for me
Oh no! Please don’t feel bad—that wasn’t the intention of the post, but rather to educate. 🙂
Not the point of the post, but to something you mentioned in passing…
Seems you’re missing some info on Tysabri. The disease you referred to (PML) is caused by a pathogen called the JC virus (which has a tendency to remain dormant in the body). Without the JC virus, you can’t get PML. For around 5 years or so, there’s been a blood test for the JC virus. So while you’re taking Tysabri, your risk is miniscule so long as your JCV test (taken twice a year) is negative. The discussion only gets serious if the result is positive. That’s something to consider if you’re ever considering a change in medication. It might not be as risky for you as you fear.
As far as I understand, my blood was part of the trial for the lab test. (I don’t understand how that works, but I signed consent to that effect at two or three visits.) I’m in my mid-30s, I’ve taken Tysabri for 9 years now, and, happily, I’m negative for the JC virus, so my risk of PML is extremely low, especially if I haven’t been sick since the last test.