The Pros And Cons of Coming Out With MS
Last week I was fortunate to be in Milan during ECTRIMS, the world’s largest MS research conference. I’ve just returned from my whirlwind trip, and I’m a little late sharing the first episode of season 2 of the podcast. Sick Little Secret: The Pros And Cons Of Coming Out With MS dropped Friday while I was busy eating pizza, staring at ancient architecture, or folding my rollator in half to make it fit in the tiny elevator.
Italy may have perfected pizza but their accessibility still needs work. I never thought I’d miss grab bars until I cut my finger on a towel bar and bled for 15 minutes. Pro tip: Unless you are a towel, towel bars are not weight-bearing.
Speaking of pro tips, this season one episode is full of them and I ignored a lot of my own advice. I didn’t ask for an accessible room. Usually all I need is a shower chair or a low tub, but just like face cloths and conditioner, Milanese hotels don’t seem to know what these items are. But back to the podcast!
Sick little secret
It’s no secret (not anymore) that I have MS. I wasn’t surprised to learn that more than one third of people keep their diagnosis classified. But it was heartbreaking to learn that of those secret-keepers, one in ten hide MS from their family and even romantic partners. Of all the burdens of this disease, shouldering it alone, without the support of loved ones is a whole new layer of hardship.
Juan Garrido is a member of the queer and MS communities. He joins us as this month’s guest to discuss the similarities between homophobia and ableism, and how ultimately, being accepted for who you are starts with accepting yourself.
The Pros And Cons Of Coming Out With MS
While people with disabilities may face slurs and threats of violence, my experience of ableism has mostly been limited to lack of accessibility and ignorance. Like at the airport in Milan, per esempio. The security officer asked The Banker, “Lei può camminare?” (translation: Can she walk?) The Banker stared blankly, the appropriate response. Nine out of ten airport security officers leave room for the possibility that I can walk enough to pass through the metal detector, but not that I can speak for myself. Fortunately, I speak enough Italian that I was able to say, “Posso parlare.” (translation: I can speak for myself motherfucker)
There’s a time for advocacy, but I enjoy travel more when I don’t get too pissy about the inconveniences of travelling with a disability. In the middle of a long travel day I was anxious to take advantage of the airport lounge with it’s comfy chairs, complimentary cocktails and high-speed wifi. As a blogger/podcaster, interacting with other Trippers is important to me. I was eager to see if there were any comments on The Pros And Cons Of Coming Out With MS. I don’t typically worry about trolls who only show up occasionally to tell me that I could use a tan. But when I saw the first comment on our Coming Out With MS episode it was homophobic. I felt sad and angry. Frantic to have the comment removed. My trip (like my life) included some obstacles, some micro-aggressions, but I was never the target of hate.
MS can impact anyone
MS affects more that cishet white women. MS can impact anyone. I hope you will watch/listen to this episode. Comment with your own story on the Youtube channel and share your support for Trippers from all walks of life. We need to make the MS community a safe and supportive space for everyone with this disease.
Tripping On Air podcast is available wherever you get your pods. You can follow me on Facebook, Instagram and Youtube. Are we on Threads yet?
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Hi
Thank you so so much for this post – it resonates with me in so many ways snd reminds me of how I used to be. Sadly exhaustion and having to ‘correct’/combat with ‘brick walls’ has worn me down. Sounds defeatist – sorry😩
But – you have made me laugh and reinforced my belief that perhaps we (the less able – and in this case, pwms) have the duty to educate!!
How many trips – even to local shops- do I encounter ignorant dickheads! But this is me – I learnt a long time ago to accept that I needed an aid to get about. Alternative was ‘sit and fester’ and I’m not ready for that.
I’m so pleased that you highlighted this – many people do hide their disability or make excuses (I know I did).
Thanks for reading
Keep well
Angela
Excellent article tripping on air!! You are such a gorgeous person! Thank you!!!🙏💚🙏⭐️⭐️
Thanks for reading!
I’ve just learned of your podcast and am anxious to listen to it. I have had this crazy roller coaster crap they call MS for 35+ years. I’m thankful that I can still walk short distances with a walker. Not happy about it but still grateful.
Thanks for checking out the pod, Debra. I hope you enjoy listening!
Good for you Ardra ! You are a brave girl ! And an inspiration ! Thanks for this. !
Hey Ardra, fellow MS trippers and other followers,
You are so spot on with your humorous blog and I can relate to so much, though not all, of your writing as I have MS myself with my own Journey.
Here is a (short) version of mine.
I got dx in 2005 at age 27 in the Netherlands but lived my life as like I wasn’t sick bc I just wasn’t.
My Neurologist had me started on Betaferon directly after my diagnosis and actually got the instructions on how to apply the injection on my 28th B-day the same year.
What a gift, of course I’ve gifted myself something excessive and probably gave into food cravings as my pharmacist (once) told me to eat whatever I want when feeling sick or under the weather (but wait, I wasn’t sick. I was feeling gloomy though which counts as well).
After 12 years of injections I switched to Aubagio (Teriflunomide) which I stopped in November 2022.
Sure, I’ve had a relapse around every three years or so, of which some were pseudo, and wasn’t mobile for a good week or 5 (during) but remitted for the next three years on due to a three day Prednisone infusion, the last of which was a high dosed, 5 day oral cure.
This modus was kind of acceptable for me.
Then came along Covid and this hit me twice (March 2021 and September 2022). And it hit me hard. So hard that, since last year, I have been confronted with degeneration of my mobility and cognition (I suspect long covid, but it is not possible to separate the symptoms from one or the other. This also does not affect the treatment plan).
This degeneration has a heavy impact on my state of mind.
I worked in export shipping (mostly documentation and/or planning) over more than 20 yrs but quit last December during rehab.
The dynamics in Logistics gave me the adrenaline rush I needed to keep on going but that also drained the energy out of me as well.
The team of specialists helped me to acknowledge that I couldn’t go on as I was going and that I’ve pushed and crossed my boundaries for much too long.
I’ve got myself a purple OM and this really is a game changer for my social events and shopping days.
When looking for this I came across your socials and catched up reading your blog and even all the remarks.
I do still use my Tripod cane but only for short distances between the door of my apartment and parking.
The Rehab center has invited me to join an aftercare support group for this morning and actually the 1st time that I will be in real support contact with fellow MS’ers.
Unfortunately this is also the last session at the Rehab but A volunteer of MS society has started up her own group session every last Friday of the month.
My Hubby and Framily are luckily very supportive of me, as is TB of you.
They help me where they can, making my life as easy as possible.
Where I find myself somewhat down at times my Hubby comes with a positive twist and lifts my spirits.
My November’s New Year is my equivalent to your Septembers NY.
I do have some resolutions for a restart of my new disabled life with MS getting myself out of the victim role which i’m currently in since my traumatic rehab experience;
Start Combined Lifestyle Intervention
Start logging my daily diet
Start logging my Journey
Catching up on reading about other MSsy journeys
Count my book reads
Not the Rehab was traumatic but the realization of the impact of the ffing MS.
Next to this intervention program I’ve asked for help getting back some control in my Life for my daily structure bc I just have none at the time of writing this.
I’m just fatigued the entire day but still try to exercise of some sort on a daily basis.
End of November I will be getting a 1 week cure of Cladribine and at the end of December the 2nd week.
Started last year with a 2x 1 week cure.
This year I will try ‘Ah Mazing Hair Vitamins from Bears with Benefits’ to prevent hair loss due to side effects.
Reading your blog helped me understand more of most of my symptoms which I neglected till last year.
Adopting your word of the year idea for 2020, my word will be ACCEPTANCE for 2024!
‘I’ve just resigned myself to the fact that I can’t accept it’
Well, I’m going out quoting some ever favorite songs;
‘I did it my way’ referring to my Journey.
‘You can’t always get what you want’ referring to my involuntary subscription to the MS community.
Hi José,
Thank you so much for sharing your story with us. I’m glad you found this site and that’s it’s been helpful to you! Best wishes for your upcoming wellness goals. I totally relate to how empowering it can feel to manage what is within our control.
A.
The biggest hurdle to me being completely “out” with my MS is the “tragedy vampires” in my life. You know, those folks with pitying eyes and “how are youuuuu today” singsongy questions? The people closest to me get it — they don’t have to ask, they can intuit how I’m doing and adjust accordingly without it be a “thing.” My close crew do not see my MS, they see, well, ME. Me, in all my Jill-ness and crazy plans and projects. I just don’t need the false care of the others (which makes them feel saintly) or the perceived limitations (“are you sure you should do that?”). So I’m not trying to hide from MS, just looking to hide from pity.
Relatable. Tragedy vampire is an excellent term.
Well said! Standing O.
Hi Jillbert, I totally resonate with your reply to Ardra’s trippingonair podcast.
There are the layers of people /friends/acquaintances etc and those who as soon as they know you have MS freak out and get all pitying which is not helpful. The ‘saintly’ false carers drive me to keep this DX to myself. It’s a challenging line to navigate. Onwards!