"We can't help everyone but everyone can help someone"
Having support from those around you can be tough... especially when you have an "invisible" illness like myself. Aside from pure exhaustion, you can't really see on my face if I'm not doing well. This can sometimes make it hard for people to understand or feel the need to support me because "she looks fine" or "she's so strong, she will be fine". I've been very fortunate that the people that love and care about me, learned about my illness. They've asked questions to help better understand, they never make me feel guilty for not feeling well, they've heard my tears on many days and for that I'm so very thankful to have such an amazing support system.
However, not everyone is as fortunate. Some have family that don't understand the extent of the illness, some have friends that think it's just an excuse to not get together, some even have doctors that don't believe what they are feeling... For these people, my heartaches. I could not be where I am today without my support system. There is no way I could have done this alone. Although, I know many do. I've made a conscious effort in the last year or two to reach out to as many new ITP faces that I can. To see how they are, to see how they feel, to see if I can offer any support. It's so important for all of you to know that ITP can be scary and you don't have to go through it alone. Your feelings are valid and your voice is important! When I was at my lowest with ITP, I took to social media in hopes of finding just ONE person that may know how I felt and to my surprise I found so many more than one. Connecting with people that know what you're going through, that understand exactly how you are feeling, that can relate to the uneasy feeling and connecting with people that have helped keep HOPE alive.
In 2022, I started facilitating with the PDSA (Platelet Disorder Support Association). We hold a support group via zoom on the first Saturday of every month now. With it being by zoom it makes it really great for anyone to join from anywhere! The group is often very diverse; people actively living with ITP, people in remission, family that has loved ones with ITP and no one story the same. That's one of the unique things about ITP... we all experience it different but the same (if that makes sense). Hearing fellow ITP Warriors and all their stories, experiences, advice, etc. has made a huge impact on me. Again, I say, it is helpful to know we aren't alone in this weird weird disease.
On Rare Disease Day, February 28th I challenged my office to show their stripes in support of ME having a rare disease. This group of ladies has always offered me support, been understanding and compassionate to the fact that I am indeed "sick". I'm thankful they showed their stripes for me!
I would like to note below is a direct link to the PDSA Support Group options. We run the Modesto meetings but you can join from anywhere! It takes less than 60 seconds to register and they send a zoom link directly to you. We meet the first Saturday of every month at 9am PST: https://www.pdsa.org/support-groups.html
If you're reading this and don't have a good support system, please reach out to me. I would love to listen and also provide some good resources where you CAN get the support you deserve.
Alone we are rare but together we are strong!
Find me on Instagram: platelet_chaser
Find my Facebook group: ITP Warriors (Immune Thrombocytopenia) This is brand new so still being worked on BUT it is available to join
Find me on TikTok: princesskc363 (I just started sharing my journey on there)