Family, partner, and friends do not understand - feel alone

@Hidden username thank you for that. 💚

@Hidden username  You’re welcome. I didn’t have anyone to tell me that it would be ok back then and it was hard as hell, so if I get a chance to give another woman a little boost when she needs it, I am more than happy to be there for her. 😉

I can totally relate. Dr. thinks it's either Multiple Scerlosis or Fibromyalgia. Haven't received an official diagnosis yet because of the pandemic. I still have more tests to go. Either way, it's like I can tell someone I'm bedridden in pain and they'll say something like, "why don't you go for a walk?" I was also told I have idiopathic intracranial hypertension (IIH) and when I told my friend, she goes "how's your dog doing?" I think people can't even comprehend the type of pain we feel or the level of fatigue we experience. They're so used to ignoring everything they act like we're supposed to ignore it too.....it feels very lonely. It really does affect everything and it's so frustrating. 

@Hidden username I totally get this. I'm flat on my back on the couch because I'm in too much pain or I'm having spasms and a friend will tell me to "stretch my legs" or "get out of the house, it'll do you some good". Total incomprehension. Sometimes I can just only laugh because there are no other words I can use to try to get them to understand. Just because my illness doesn't have me losing my hair or injecting a medication or breaking out in purple spots or what have you doesn't mean it doesn't exist!

Hi there,

I think everyone who has a disease can relate. The pain, the fatigue, the fear, the doubt, the non-wanted opinion... Sometimes, everything is just hard to deal with. And no matter how much your family and friends love and support you, there's like an invisible limit they can't reach. At a certain point, you're always alone with yourself. But when you're sick, the loneliness can feel overwhelming...

I’m so tired of hearing my family tell me “I have so much to be thankful for!” No one understands that I am aware of everything I have but depression consumes me!

I can relate to all of this. It's a long, lonely journey. If any one of you is dealing with a lot of anxiety (which most of us are and, as we know, adds to the stress of what we're already going through) there is a really good book out and reading it is like having a friend who is with you, holding your hand and telling you that she knows exactly what you're going through. She's a lifesaver. We all need that. The writer - Sarah Wilson - deals with so much physical pain and difficulties along with the anxiety and her words are so helpful. The book is called First We Make the Beast Beautiful. A wonderful book. 

Hi, I'm Beverly. Most days it seems as if my close family more or less understands my pain. They've been living with it for long enough! But, it drives me nuts and really depresses me when I'm met with "Well, if you'd just get out  and exercise more..." or " Let's go to the mall!" I would do ANYTHING to be able to get out there and exercise more or go to the mall! I can't walk more than 20 ft without my back and left leg giving out and this God-awful clenching pain in my thigh! I need my seated walker to go most places, as it is! 

It kind of a "If ya can't see it, it's not there..." 

I can also relate because I suffer from fibromyalgia, multiple spinal injuries, osteoarthritis that mostly affects my spine, and many other conditions causing chronic pain. The pain is constant and 24/7. It's hard enough managing the mental and physical struggles from my conditions, and the lack of support makes things even more difficult. I truly hope you all find comfort and peace even on your worst days🫂🙌💞