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?
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)
As a person with rare non curable disease I have a lot of bad days .. I cope in these days with self care.. shower and just let water run as hot as I can take on those days, spiritual meditation, sleep in dark quiet room
Hi, again, Katt 😀
I agree... we must allow the grieving to pass through and then find renewed joys in life. I love what you said about ;moving forward.' We rare disease warriors definitely have to become creative at times to meet our needs, and to keep forward motion in our lives.Hope you are having a sweet beginning to your week,
Gina
Team MemberThese sound like great methods of self-soothing and self-care. I also love the comfort that warm water brings. I have POTS (Postural Orthostatic Tachycardia) and therefore can't take super hot baths or showers... (yet another thing that I have to mourn due to chronic illness!) One of my favorite stress relievers is to sit down and watch a horror movie with popcorn. Something about that is so comforting to me. Keep an eye out for my most recent article to be published on how journaling can help us cope with rare disease! Warmest regards, Tatiana (raredisease.net Team member)
