Biggest challenges you face in your current journey?
Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a difference?
I need people who aren't going to put MORE stress on me. My family is already under strain because my mom has 3 different causes of dementia and leukemia. It's caused a massive strain on the family just trying to help my dad find resources. I have a sister who voluntarily goes to help then blames me for not coming down to "do my part". She was mad because my father told her that he was proud of me and not her. Then there's my husband and children who have all of the sudden reverted to being sullen teenagers. I just can't take much more. I don't sleep or eat much of anything. It feels like someone has rested a building on my shoulders then expects me to carry it for them. I can't. I really just can't. My motto has always been lead, follow, or get out of the way... right now I'm at the get out of the way stage.
Thank you Donna. My mom has been such a trooper. She did 45 minutes straight of physical therapy yesterday. My dad sent a message over facebook messenger that medicaid isn't even going to give him an answer for 3-5 months. Today I feel like my symptoms are a factor however so you are absolutely correct about my getting a coffee and relaxing. It's the only way to handle the POTS syndrome and the (Not rare) Raynaud's.
Truly, I am grateful for all the listening ears here.
Lyn
, it sounds like you are feeling a little stronger today, and for that I am grateful. I'm glad that things look a little brighter for your folks, despite the achingly slow bureaucracy. I'm also glad you found some quiet time to allow yourself to recharge. Sending (((hugs))), Donna (Team Member)
Currently my rare disease experience is the best it's probably ever been the last few years. I was diagnosed with mine in the mid 1990's, when the internet wasn't much of a thing, so support was very sparse - that was my biggest challenge. What helps me the most with my rare diseases are educating myself about them, online rare disease communities and counseling to help me process everything that comes with it. Facebook has grown to have several specific rare disease groups that I've found by searching for them by name that's been helpful as well as communities such as this one. i also have cultivated a strong support network amongst friends over the years. How are you doing with experience and what have been your biggest challenges? Connecting with someone who understands what I'm going through.
Hi
,
I also had this challenge when I was first diagnosed with MAC Lung Disease, and then again when I learned I have cystic fibrosis. it felt very lonely to be going through these illnesses 'on my own.' Thankfully, I found online support groups of other patients for both, but I know that not all rare diseases have specific support groups.
Have you searched the name of your disease and the words support group?Gina Miller,
Team Member
I'm so sorry to hear that you are having trouble finding people who can relate with what you are going through. I've personally found that finding other people who suffer from general chronic illnesses can be helpful, but not a perfect solution - because although we might be able to understand and empathize with the other person in a general sense, they're never going to truly know what it is like to live with our disease. Personally, as a person with narcolepsy I have found narcolepsy support groups to be extremely helpful for me. But even then, not every person with narcolepsy has the same experience with narcolepsy! Some people have mild narcolepsy, others severe like me. It has taken time to find support in many different facets of my life. You are always welcome to share with our rare disease community in any way you see fit! Warmly, Tatiana (raredisease.net Team Member)
Navigating this journey often means facing challenges like finding reliable support and managing stress.
Connecting with support groups, therapists and loved ones can make a huge difference., have you found help and support in surprising places? - Warmly, Donna (Team Member) I definitely agree that connecting with support groups, therapists, and loved ones can make a HUGE difference when living with a rare disease. I have a narcolepsy support group that I attend, that is full of people living in similar circumstances and struggling with similar symptoms. It can be so validating to hear how similar our lives are. It makes me feel like my needs are valid, and if they are worthy of their needs being met then obviously so am I. Are there any other techniques you use to manage your stress? I am looking for some new tools, and I think the community could benefit from discussing this further! Warmly, Tatiana (raredisease.net Team member)
