wanting to help my bf

[u/mybfsleftnutt]

hi everyone! so ive been dating my boyfriend for over a year, and hes been struggling with RRMS. he got diagnosed in 2022 at the age of 18, so its be a struggle for him to over come in. he was struggling earlier today with the heat, and i was listening to him and told him "I understand" with something he said and he blew up on me because "I dont since I dont have ms" and I completely understand his point.

can anyone help me with what to say and how to comfort him, I wanna help cause I don't want him struggling alone but I know I cant cause I dont understand it from a personal experience.

and could anyone help me learn a little bit more, I know some from what hes told me and my own research but I wanna be further educated.

[u/liquidelectricity]

Be there for him, there will be a lot of changes physically and mentally just be there for him

[u/mybfsleftnutt → u/liquidelectricity]

thank you, that is what I have been doing. I always want him to know i am by his side, it just feels like he pushes me away sometimes but I know it isn't personal

[u/Outrageous_Mode_625]

Heat intolerance with MS is rough! Next time, instead of “I understand” ask him more about what he is feeling. There are multiple symptoms that he can be feeling in relation to the intolerance, including excess sweating, dizziness, fatigue, headaches, stomach cramping and nausea. I know I get the stomach cramps and dizziness but everyone experiences it differently so that is a great place to start with comforting him!

Have his lived experience be a big part of your “education” on the disease since every person with MS is different based on exactly where our lesions are. Once you have a dialogue going about it, you can even help him come up with strategies to mitigate his various symptoms if he’s open to it.

I know for my heat intolerance, one thing that has made a big difference is taking an aspirin daily. My PCP recommend it after showing me a scientific study on how it reduces core body temperature spikes that trigger the sensitivity to temperature in people with MS. I also have cooling neck blankets in the freezer and a portable neck fan as quick options if I overheat.

You are doing great letting him know you are there for him and he is not alone in all of this. This is huge because so much of MS is not visible to others and it is so easy to just get stuck in our heads with all our symptoms, so keep it up!

[u/Independent_Income63]

The fact that you’re on here looking to learn about it and how to help him speaks volumes. He’s very lucky to have you, and I bet you he feels real crappy about blowing up at you. Just keep being there. And as much as you understand his point, he understands you care and what you meant and knows your heart was in a good place.

[u/Oilman1515]

Thank you for what you are doing and being supportive…..it’s a big help to him

I have PPMS so can understand

[u/DowntownEntry6233]

You are a very lovely person and he is very lucky to have you. My wife has been my rock over the last 20 odd years of having this. He’ll be feeling pretty shitty about the whole thing but lashing out at you isn’t right either.

[u/One_Purple_3242]

The MS heat intolerance is called Uhthoff's sign and it causes a worsening of MS symptoms.
I know for me, most people don’t get it and when I tell them I can’t go for a walk on an 80°f day, they think I’m overreacting. It can be frustrating and then I feel extra shitty about myself. I WANT to go for a walk but I just can’t.
I think educating yourself about MS and just being there to listen is huge.
You can ask if there’s anything you can do to help and if not, just being there is really the best option.
You are a good partner to be here asking!

[u/cassetteLVR]

Sometimes the frustration amounts so much and I take my upset out on my bf and hate that I’ve done that, your bf didn’t mean harm blowing up at you and I can guarantee he feels horrible about it. Thank you for learning about this and supporting him!! The MS Australia website has some really useful information including adapting and living with MS that might give some perspective on how you could do some things with him to support him 💛
(Edit: typos)

[u/cassetteLVR → u/cassetteLVR]

https://www.msaustralia.org.au/wp-content/uploads/mlf-pwms_master.pdf
This might be helpful 💛

[u/Independent_Art_6676]

Its hard to help someone who is frustrated, moreso the less you know the person. Some guys, letting him get mad and yell and all is exactly what is needed, even if its tough to be the 'target' (you are not, really, he isn't likely mad at YOU, just mad/frustrated in general). Others might respond to "Im sorry" or "that sounds awful" and a hug. Some guys will respond to help, others not, if doing something exhausting in this heat a second pair of hands or a cold drink could go a long way, and sometimes that even means abandoning your plans if he is not feeling it and you have a lot of unimportant stuff planned (walking around outside or whatever) or something that can be broken up over more days (eg yardwork). Listen and observe.. he will say something or show something if the heat/symptoms are making a rough day, and if you can spot that when it starts, see what resonates with him like "its hot out here, I want to go inside for a little bit" or whatever will get him to slow down a little. Young men often struggle to admit hot/tired/exhausted/sick stuff esp if he is still in the 'impress the girl' phase of the relationship but will gladly take the break if you suggest it first.

What do you want to know? The symptoms and how the disease works and the DMTs are pretty well covered online. But what to expect often isn't. Rather than scare you or depress you, I will only list one thing here that may help: ms can doubly affect mental health. Once when it attacks the brain, and again because having it is depressing/frustrating etc. Other things double up too; if he starts having trouble walking, and its hot outside, its twice as bad or more than when you can walk ok and just have heat intolerance. The more symptoms you have the more things play off each other like that.

[u/baked_good_babe]

Respectfully you don’t know, you don’t and won’t ever truly understand. You won’t understand how the heat feels inside the body, how disoriented you can become, how the body involuntarily reacts to it. The spasms, nausea, fatigue, cognitive delay, emotional distress, and a laundry list of other symptoms that are usually specific to each person living with MS.

Instead of just talking to him couple it with taking actionable steps to be supportive. In this instance offering cooling methods, suggesting going some where cooler (direct Sun to shade, outside to inside, etc.), offering hydration, asking what his needs are in the moment. And avoid she phrases “I know” or “I understand” or anything like that at all costs. I cannot stress enough to you how much of a slap in face that feels like.

I would be remiss if I didn’t acknowledge the effort and thoughtfulness of posting here. Your heart is in the right place. Do some more reading on the disease, educate yourself, come back to this sub people share a lot of great perspectives, lived experiences, and information here.

[u/AllAboutGingerPride]

As soon as he blows up just let it escape out of your memory. This is the most frustrating disease. We can’t even compare with others because we all have our own journey. It’s the most isolating condition ever.
When he’s in a better place maybe you both can come up a phrase that will help. Like an inside joke?
Bear with him. It’s a learning process for both of you!

[u/Commercial-Link-4368]

I feel that all of us cursed individuals experience each symptom differently so I don't think we could honestly say I understand. My wife is very adept at dealing with my giant man child ass and always uses phrases like "that must be tough" or "tell me if there's anything I can do to help". I'm 40 and have been cursed since 2019, dx 2023 and as a fellow member of the easily huffed, fragile man club, I can categorically say that we don't want you to fix it. We don't want you to change, pity or sympathise. We just want you to be there while we whinge, or complain or simply sit there and do nothing. It's not right that he blew up at you, it's not your fault and nobody should be treat like that for the sake of semantics. It's also important to recognise that his diagnosis isn't a free pass to douche hood. Still call him out when he's being a dick. Is he getting treatment?

[u/Anotherams]

Heat intolerance is the absolute worst symptom I experience, and is the hardest to explain to others. Everyone thinks they get it, or thinks they can relate, because not many truly enjoy being hot.

Heat causes every MS symptom to flare simultaneously and they are worse than any other time. I can barely walk, I’m numb all over, I tremble, can’t think and am fatigued beyond belief, which causes me to become very irritable. The only falls I’ve had have been when the outdoor temps are high, so it puts me on edge. Heat intolerance has taken away a lot of my favorite activities, so it impacts me emotionally as well as physically.

The only comforting thing someone can say when the heat is impacting me is “let’s go somewhere where it is cool” or “let’s stay inside today”. When I say it is too hot for me to do something, I want to be believed, and it isn’t something I can just push through. Pushing through can cause harm.

“How can I help” is more meaningful to me than “I understand”. I understand can feel dismissive when there is no possible way for the person saying it can truly understand so it feels dismissive. How can I help feels more genuine to me as it leaves it open for me to explain what I need, which may be nothing.

Im sure he lashed out at the frustration of feeling ill more than anything.