Biggest challenges you face in your current journey?

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)

, 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)

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 Member

 These 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)

Thank you for highlighting the importance of emotional support via patient support communities, therapy and trusted relationships. As you mention, needs for understanding and guidance along our healthcare journeys can also be met through these avenues. Additionally, your initial words regarding 'facing our challenges' and 'seeking support' highlighted for me my need to keep myself free of shame, to be able to confidently continue to seek out empathic support. I've definitely found myself on a ongoing journey of self-compassion.
Thanks, again, Benjamin. Hope you're having a good day!
Gina (Team Member)

 This is incredible insight. I completely agree that community is essential when living with a rare disease, or any kind of chronic illness. It helps remind us that we are not alone in our struggles. I know, personally, when I feel alone, like no one understands, that's when I am in my worst mentality and life with rare disease feels much more difficult. Connection with others helps keep me on track. How do you find the time and energy required to maintain your interpersonal connections? That's something I struggle with, especially in the winter months when my energy levels tend to be lower. Thanks so much for sharing! Warmest regards, Tatiana (raredisease.net Team Member)