Misunderstandings Effect Living Situation

By parmes

1 min read

Hello. I'm posting because this is the only place I feel like there might be someone who understands.

Invisible pain

I'm exhausted with having to tell people I'm in pain. I live with my husband and his parents, and things are coming to a head with them because of my illness.

Constantly misunderstood

Apparently, because I'm someone who pushes through and doesn't lock myself in my room every time I'm in pain, my pain doesn't exist. I couldn't possibly be having a "real" migraine because I was dancing earlier (to forget/distract from my pain). I'm just emotionally manipulating my husband by telling him my actual pain status.

Looking for advice

I don't know what to do, I have absolutely no control over the situation I live in. No job, can barely eat properly, and also have seizures, autism, and fibromyalgia (which apparently also doesn't exist in general). So I find it extremely difficult to be employed for more than a month before everything flares up again. I'd like to apply for disability but I have no idea how to get all of my medical records. I'm hitting a wall.

Thanks for reading.

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Nancy Harris Bonk Moderator
Hi <inline-mention username="parmes" user-id="3857805"/>, Thank you for reaching out and sharing your difficult journey with us. I wanted to let you know you're not alone in struggling with multiple chronic health issues - we're here for you. The first thing that comes to mind is taking your husband and/or in-laws to one of your doctors appointments. This has a dual purpose first being it will make things "real" for them to hear your doctor validate you do in fact have pain and discuss treatment options. The second is it helps us have a second pair of ears during a doctor appointment - it's easy to miss things. In fact contributor Ashley Hattle just wrote about this topic you can see here; <a href='https://migraine.com/living-migraine/support-person-during-doctors-visits' target='_blank'>https://migraine.com/living-migraine/support-person-during-doctors-visits</a>. Would your family members be interested in reading about migraine disease? Sharing information is a great way to validate exactly what migraine disease is and isn't. We have more information you can read here; https://migraine.com/search?s=those%20who%20don%27t%20get%20it <a href='https://migraine.com/blog/family-and-friends-that-do-not-understand-migraine-disease' target='_blank'>https://migraine.com/blog/family-and-friends-that-do-not-understand-migraine-disease</a> <a href='https://migraine.com/blog/how-to-accepthandle-people-who-dont-understand-and-dont-care-to' target='_blank'>https://migraine.com/blog/how-to-accepthandle-people-who-dont-understand-and-dont-care-to</a> Applying for SSDI can be a daunting experience having gone through this myself. Let me share our information on SSDI with you for some more insight; <a href='https://migraine.com/search?s=SSDI' target='_blank'>https://migraine.com/search?s=SSDI</a>. Another option is to explore <a href='https://www.allsup.com/' target='_blank' rel='noopener noreferrer ugc'>https://www.allsup.com/</a>. This organization assists with the process and I've heard some very good things about it. I understand how frustrating this is. Please keep us posted. Hoping today is a good day, Nancy Harris Bonk, Patient Advocate/Moderator
katiearens93 Member
Hey, I feel you 1000%. Sounds like you have much more that ails you than me and even I find it impossible. How are you supposed to keep a job when you need 5 days off a moth and you don't know when those 5 days will be... its not exactly something that would get you hired from a job interview. I've been unemployed for 5 years and have been trying to work from home (unsuccessfully) but I am extremely lucky to have parents that support me. I am also on a waiting list for a specialized therapist so fingers crossed I can learn to work around my migraines. I really hope you can find a way to work around it as well! Best of luck and lots of love. 
1. katiearens93 Member
 <inline-mention username="Nancy Harris Bonk" user-id="3845796"/> Hi Nancy, I'm excited to have found this community. I have been trying to figure out how to deal with my migraines alone for so long and now I can share and help other people that may be going through the same experiences as me. Feeling optimistic! 
2. Nancy Harris Bonk Moderator
 <inline-mention username="katiearens93" user-id="4524514"/> That's great!!! Good to hear and we look forward to your updates!! Nancy Harris Bonk, Patient Advocate/Moderator
hitesh-goenka Member
Misunderstanding is a euphemism that I use especially for people who have witnessed my sickness since I was a toddler. If such people won't accept me along with my sickness, then how can I expect others? I wonder how some people just downplay my symptoms as if I am obsessed with being a cry baby all the time. But then, why should I expect them to compromise!!! So, I give them some space...a lot of distance.
1. Nancy Harris Bonk Moderator
 <inline-mention username="hitesh-goenka" user-id="3755282"/> I completely understand this. I think we compromise enough living with chronic illness. Removing, or distancing ourselves from toxicity is always a win! Thank you for sharing, Nancy Harris Bonk, Patient Advocate/Moderator

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