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Does anyone else have family who 'just don't get it' thus leaving you frustrated?

  1. For sure they will never "get it." I have a 20 year battle with this horrible, painful condition and yet to this day my family does not understand. They care deeply, but they still do not understand. Such as if I say I don't feel like going out to eat because my legs are on fire and heavy pain and immediately one of them will say ... wonder what caused that. The only person you are going to find that understands is another person with MS.

    1. Thank you! x

  2. , so sorry to hear that your loved ones seem perpetually clueless. Besides frustration, that can really hurt us. It seems as if they don't want to read about it and learn more so they can better support us when symptoms flare and we try to express what's going on.

    I went through years of my family not even acknowledging my MS, so I was on my own, managing it both physically and emotionally. But eventually they came around, and that was largely a matter of the circumstances in their lives. I've come to accept the fact that people have priorities such as focusing on their children, their work, and whatever else consumes them, and that's okay. I can talk freely about my symptoms with them now and receive wonderful support and feedback.

    Sometimes loved ones get on board with it, but a lot of people with MS will never enjoy the participation of their loved ones.

    That's why online MS forums are so valuable! We get you. I hope you'll come back and vent, ask questions, and participate here in any way you need and want. Thank you for sharing your situation. We care and we're here for you. --Kim

    1. Hi kim....I'm just glad it's not just me that feels like this!
      I tend to go into myself when I'm have a flare up.
      Not only because no one understands it but I don't want to bother anyone.
      Can get pretty isolating at times.
      Thank you for your support x

  3. Unfortunately no one will understand anyone with a chronic disease besides someone else with that same chronic disesse. My immediate family had and still has no clue and I’ve had MS for over 20 years. Friends come and go in everyone’s life for whatever the reason. From my experience I didn’t want to be the person with MS. I tried the best I could to live with my husband and our children. Unfortunately depression kicked in anyway. As I got worse people were living their lives around me. Friends and family took me out to concerts and to dinner but it just too difficult. I was left alone a lot with my prescription Xanax, Paxil, sleeping pills and I decided it was a good idea to drink because it made me feel a little better. (For the moment). This all sent me down ugly path. I was a burden to my children, my husband. Even though I didn’t for much at all. So one night I figured it would be better just not to be and went there. Suicide attempt. It would have worked if it wasn’t for my body throwing up some of the 90 pills I took. I guess someone just wasn’t ready for me yet, long story short. I’m in a nursing home now, I’m on an antidepressant that actually works (lexapro) and I can deal with anything that gets thrown at me better. Mental health is extremely important in any chronic disease. I’m definitely a stronger person for going through what I have. Good luck and YOU take care of yourself ❤️

    1. Hi.. My family never understood or wanted to be involved when I went through my symptoms, years of diagnoses, or now over 20 years of dealing with this disease and 2 other autoimmune diseases.
      Now I am accused of being a failure in my life because I didn’t ‘succeed’ and ‘work hard’ or despite my siblings not knowing how I’ve lived my life the last 30 years, actually I have been an advocate for others with these issues and more which hasn’t been financially rewarding, but has made me ‘rich’ in more important ways.
      It still hurts to hear judge me by their standards and with no recognition of the challenges I face.

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