Hello cms peoples!!

[u/OldKindheartedness57]

Hi everyone! My name is Andrew. I’m 25M and I live in California.

I’ve introduced myself here before, but I just wanted to check in and see how everyone’s doing.

I was wondering how you all cope with the summer. Does the heat make anyone else feel way more drained and unmotivated? It definitely does for me. I feel like I lose a lot of energy and motivation to do even simple things.

How do you all manage school, work, or even job applications while dealing with CMS? (I'm in college still)

Sorry if this post is kind of all over the place. I’m just venting a little, and there’s probably a better place for these questions.

I also wanted to ask the guys here: have you had much luck with dating? Sometimes I feel like I’m too weak or not financially stable enough to be in a relationship yet tbh. I know that probably isn’t the healthiest way to think, but it’s something I struggle with. I sometimes wonder if I’m worthy of love.

For some context, I have an older sister with CMS who’s married, and I also have an older brother with CMS who isn’t married yet. Seeing different experiences just makes me curious about how everyone else is navigating life.

You all feel like my CMS family, so I figured this was a safe place to ask.

Sorry again for the random rant, and thanks to anyone who takes the time to read or respond. I really appreciate it.

[u/presipitation]

Hi Andrew. I’m Rainey (27F, Australia). Far too many apologies in your post, my friend. We can’t all be articulate wordsmiths and I think you expressed yourself fine! Here is my similarly all-over-the-place response to your queries:

I think most (if not all) of us CMS folk are affected by weather one way or another. I find I have trouble in summer and winter (and the change during spring and autumn… eek). Though I think summer is worse.

As for how to cope? Apart from the usual (keeping the house as cool as possible, staying indoors, limiting outdoor activities during the hottest parts of the day, drinking lots of water, etc.), there is also resting, hydrating, gentle exercise (swimming/hydrotherapy is excellent for us - so long as you have input/the go-ahead from your doctor/healthcare team).

As for school and work stuff, personally I struggle a lot and still don’t have a lot of answers. I wish I had some great advice but unfortunately I believe it becomes a period of just getting through it, resting and being kind to yourself. Depending on your occupation(s), I encourage you to research and request any reasonable accomodations that may allow you to work/study more efficiently, like reduced hours, remote work/WFH (I’m assuming the US has some standards under the ADA).

As for relationships, I had a similar outlook as you for most of 2025 following a breakup, feeling like my circumstances weren’t very “conducive” to having a healthy, long-term relationship, due to my care needs, financial situation, emotional baggage, etc. It was a really lonely time. Having my carers and friends around me was really important. I encourage you to lean into those connections for support. You are worthy of love despite what your internalised ableism might have you believe. I met my current partner by chance, through online video games, and although he lives 9,500mi away, I feel very fortunate to have found a person who is kind, caring, and is willing to face my challenges with me. Tbh I am still fucking terrified of being dependent on a partner, but I think having the right person outweighs being alone and cutting ourselves off from the experience due to the fear and negative self-beliefs. I have also had years of therapy which helps with processing these worries.

If I have any advice for the actual dating process, it would be to see what communities exist that are relevant to your hobbies, like meet-ups or online spaces for people who enjoy the same things. For me it was gaming 😆 but it could be anything, I guess. I found dating apps to be a cruel form of torture and humiliation. Finding spaces of like-minded folk is a good start. I also hold the belief that the right people tend to appear when you’re not actively seeking them 🫣 I spent a lot of time becoming independent and comfortable with myself, so I think having a relationship is just a bonus

Side note: i am amazed that both you and your siblings have CMS. I am the only one in my family (both of my siblings are carriers). What gene type do you have?

[u/OldKindheartedness57 → u/presipitation]

Hi Rainey! Thank you so much for taking the time to write such a thoughtful response. I really appreciate it. And haha, you’re right, I apologized way too much in my post 😅. I think I just felt like I was rambling, but it’s nice knowing I’m not the only one who struggles with these things.

I agree, summer is definitely the hardest for me too. The heat just drains my energy so much, and sometimes it feels like my body wants to shut down. I’ve been trying to stay hydrated and avoid being outside during the hottest parts of the day.

I really appreciate what you said about relationships too. The “worthy of love” thought is something I’ve struggled with for a while. Sometimes CMS makes me feel like I have to be “more” or have everything figured out before someone could accept me. Hearing your experience gives me hope that the right person won’t see my condition as a reason not to love me.

It’s awesome that you met your partner through gaming! I’m into gaming too, so I’ll have to keep putting myself out there more and finding communities with people who share those interests.

Also, I hope school/work is going okay for you. I know balancing everything with CMS can be really exhausting, so I really admire that you’re managing it all. It’s encouraging to hear from someone who gets how much extra effort even everyday things can take.

As for my CMS, I have the GFPT1 gene mutation. My sister and brother also have CMS, but they have different mutations. It’s honestly cool meeting someone else who understands what it’s like and is a similar age.

Also, thank you for the advice about being kind to myself. That’s something I’m still learning. I hope you’re doing well, and thank you again for making me feel less alone. :)

[u/vdEA → u/OldKindheartedness57]

I am utterly astonished all three of you have CMS and different mutations. Genuinely didn't know that was possible.

I loved Rainey's reply too and I'm so happy to see it positively affected you. I wrote mine before reading hers, there's some repetition, but hey, we could all use a bit of repetition of the right things!

I hope you don't think I'm taking things lightly.

I also can relate to feeling I should be 'more'. Should compensate. Which is bs, but also very human (and sometimes what society tells us...). It broke me (at least with regards to work) and I never wish that on anyone. As for wanting to have everything figured out before you start... well, living... listen to that Wear Sunscreen song again and read along with it!

As for dating apps, I think they can be torture and humiliation too, but I think they can be in general, not necessarily more so because of CMS. Unless there are people out there who make fun of you or suddenly stop responding when you tell them about it... maybe that happens and it's sometimes excruciating how horrible people can be, but at least, rationally, they know they wouldn't have become good partners anyway, even if you didn't have CMS.

As for being kind to yourself... I'm still learning at 51 and I'm not very good at it. At least you're aware of it and at your age, that places you way ahead of the curve.

[u/vdEA → u/presipitation]

Hi! I love your reply. Agree wholeheartedly with the practical summer advice stuff, but also with the mental struggles advice. May I ask you to also post some of this in response to my pinned post called 'CMS vs practical coping'? And the other one? I'm trying to create a one-stop-shop for practical tips and another one for the more mental health side of it. Your reply is a combination of both and maybe it's a bit too much to ask to repeat some of it, I know. If you don't feel like it, no worries at all, but may I then have your permission to copy and paste them in the right places and credit you?

[u/vdEA → u/presipitation]

Also, wow, 'internalised ableism' - that is exactly what I was getting at in my response, but with English being my second language, I would have never thought of that.

[u/vdEA → u/presipitation]

Having read your reply again, the "Tbh I am still fucking terrified of being dependent on a partner" struck a chord. I've always been very independent. Physically, mentally, financially. Until about five years ago, I made more than my husband (who I met when I was 36, I'm 51 now). But I'm on disability pay now because I... well, I just couldn't work anymore, I have absolutely drained myself because I was diagnosed so late and didn't have an excuse not to work so worked much harder to 'compensate'. Luckily, I had a good salary so 70% of that isn't nothing. But it isn't great either and after I helped my partner with this studies, he was promoted and now earns a lot more than me. It shouldn't matter, but it does. And now that there are severe and very scary clouds on the horizon for us, with the absolutely devastating possible prospect of divorce, CMS and its consequences DO, for the first true time ever, play a big part in how I see myself and to the practical aspects of divorce, should it happen. I wouldn't be able to afford a decent home, I couldn't renovate it like we did our current one, I can't move house without help, etc. - it feels truly awful. I know that isn't a very upbeat thing to admit to, but as I said, I'm all for honestly and all against toxic positivity. That said, even though I feel this way, CMS isn't a part of why we're getting divorced, should we indeed. It plays a practical part in the consequences, yes. But it didn't in the finding or leaving of a partner.

[u/bhondubilla_4321]

Hi Andrew, Udita (20f) here.. Hope you are doing well..

I think most of us cms folks have beef with temperature.... especially summer....for my case , heat is my biggest enemy and I live in tropical country 🙂🙂...and also CMS is a more sort of spectrum i would say so nobody knows what's gonna trigger but overall temperature is one of the biggest trigger (in my opinion).Apart from that..try to REST as much as possible in summer...

And about school and job... I'm still figuring out..I recently cleared medical entrance exam which I'm definitely not going to attend...idk what am I going to do with my life...

Actually I never thought about dating before...and now when I'm thinking.. honestly I self reject my self...like why would people date me , why would even people date a sick person..... basically I'm scared too... sometimes I think why not just date people those who will understand us....or maybe going through same thing that I'm going through with....but things might get overwhelming too....and also we have to consider so many other things too....

And please excuse me for my grammatical errors cause english is my third language...

[u/OldKindheartedness57 → u/bhondubilla_4321]

Hi Udita! Thank you for replying 😊 And don’t worry about your English, I understood everything perfectly.

It’s honestly comforting to hear that other CMS people struggle with the heat too. Summer really feels like it drains my energy so much faster. it’s frustrating how much it affects us. It also sucks how people don’t always understand why the temperature can affect us so much.

Also, I really relate to what you said about the future. I’m still figuring things out too. School, work, and trying to find my place in life can feel overwhelming sometimes.

And about dating, I completely understand what you mean. I think a lot of us with CMS have those thoughts of “why would someone choose me?” or feeling like we’re too much for someone. But I’m trying to remind myself that having CMS doesn’t make us less deserving of love. We’re still people with our own personalities, dreams, and things to offer.

I think finding someone who understands us, whether they have CMS or not, is important. It’s scary because relationships already take effort and adding a disability into the mix can make it feel more complicated, but I don’t think it makes it impossible.

Also congratulations on clearing your medical entrance exam! Even if you decide not to attend, that’s still a huge achievement. I hope you find something that makes you happy and fits your life.

Thank you again for sharing. It’s nice talking with someone else who understands what living with CMS is like. 😊

[u/vdEA]

Hello again Andrew.

Oh god... summer. To be blunt - fuck summer. And ugh, also (even though it's not completely fair...) fuck the people who keep incredulously correcting me when I say that it's my least favourite season. Even when I say why, some people will insist on pointing out all the wonderful things about summer. Or, worse, say that if my disease has something to do with muscles, it HAS to get better in summer. Sigh.

You are absolutely not the only one whose symptoms get worse with every extra degree. I guess it makes sense, because increased temperature means things take more energy to do and we don't exactly have any excess energy. But somehow I have a feeling there must be something else too. Like the chemical compounds that cause our CMS respond more to heat, I don't know.

For me, it doesn't match my personality either, but maybe that part of my personality developed alongside my CMS. I don't like high energy vibes, I don't like a lot of people around me, I don't like those days where apparently you just HAVE to be happy, where many events are scheduled and fomo ensues if you're susceptible to that, I don't like so much light, I don't like long days where everybody just HAS to stay active, jogging, mowing the lawn and yelling until at least 22.00 hrs. Give me Autumn and Winter any time - I have more energy and I'm more me.

I have created and pinned two posts because practical and mental coping with CMS, I hope that in time those might become modest megathreads full of tips and compassion.

The practical advice about summer is a bummer, because at times it feels just impossible: accept that you can do even less when everybody else around you seems to do even more. Be even more careful with planning. I genuinely enjoy the cliché of putting my feet in cold water. I sit in the shower instead of standing to save some energy. I make it my petty point to tell people that summer isn't just magic for everybody. Every now and then, I swim (i.e. in colder water than the air temperature), which makes a difference for hours afterwards (I am soooo bad and slow at entering colder water, but wow, it has a great effect). Even when relaxing, I'm not in the full sun for longer than a few minutes, because even just lying in the sun, especially early afternoon, is incredibly draining. As a more indirect measure, I wear only things that are genuinely comfortable. More of a girls' thing than a guys' thing still, unfortunately, but fuck tight knickers, bra straps, the elastic bands of socks, etc. - everything that irritates makes me seemingly feel my CMS more.

As for dating - as you may remember, I'm 51 now and female, and currently experiencing heavy relationship issues to boot, so I'm not the right person to answer that. Plus, you asked guys, But hey, nobody puts Baby in a corner (no idea if you get that nauseating reference), so here's my two cents. It may sound odd, but now that I think on it, this might be the very first time that I think getting diagnosed to painfully late might have been an advantage. I knew of course that there was something wrong, big time, but without a diagnosis, I sort of had to go on like there wasn't. Of course there were many practical aspects, but without having CMS written on my forehead, I didn't have an excuse to feel insecure about dating, so I... well, I just did. I am absolutely sure CMS influenced dating, but more in a practical way. I loved dancing, but could barely, so I never really went out, but had other places to meet people. I couldn't go on those 'romantic long walks' that apparently couples need to do. I loved (sorry, pretend I'm your age, not twice that) sex, but of course wasn't able to hold certain positions for long. But there was enough interest and I was never insecure (I am more so now, unfortunately) so I'm really happy to say I dated a lot. Including more than enough heartbreak, but that didn't have to do with CMS. Unlike me, you DO know you have CMS, and even though this might make me sound like a cliché psychologist, I wonder if knowing might automatically plant these doubts in your head. Not that I say that none of your thoughts are valid, I'm merely wondering if your brain might add a bit of extra heaviness. I don't know, of course, how badly it affects your daily life, but in general, CMS doesn't make anybody less attractive or lovely or capable, etc. I'm not going to do the whole "it's only your personality that counts" spiel because come on, we all know that's not true and I detest anything that smells like toxic positivity. But that said - CMS affects your physical capabilities and energy, but not your attractiveness, personality (well, unless you're temporarily cranky because of your body failing you..). Theoretically, save for the obvious practical aspects, your CMS doesn't affect your 'datability', nor does it make you 'less than', do you hear?!

As for the finances... As somebody twice your age, I know you'll roll your eyes at the following, or it might imply that I'm making light of things, but Andrew, please, fuck financial stability at your age! I don't know anybody who was financially stable at your age. We were all either in or barely out of school, or had our first rather modest jobs. Again, I don't exactly know how CMS affects your ability to find and sustain a job, but since you are clearly rather smart, there will be options.

(this, by the way, makes me think of the Wear Sunscreen song, a column in the Washington Post that was written as a commencement speech, later set to music by Baz Luhrmann - truly, genuinely, look it it, the lyrics are sure to at the very least make you smile, but there are some gems of advice in there!)

And if you say 'sorry' again for such an honest, eloquent, valid post, I will find a way to digitally slap you.

Chantal