Thriving with a Rare Disease

Dot using her Bob Books word cards to spell her name.

Living with a chronic illness or rare disease can be challenging and can often feel like a burden. Dot personally tells me that she doesn't like that she has to take growth hormone shots six days a week, and her brother doesn't. We have lots of talks about how everyone has their own thigs they have to deal with, and this is her thing. I can be as supportive as possible, but this is part of her life and will be so it's important to accept and understand that. It can be easy to get caught up in the negative aspects of the condition and to let it consume your life. However, it is important to remember that it is still possible to live a full and meaningful life, despite the challenges that may come with a chronic illness or rare disease.

Here are some tips for living life to the fullest while dealing with a chronic illness or rare disease:

Set goals and work towards them: Having goals and working towards them can give you a sense of purpose and help you feel more in control of your life. These goals can be big or small, and can be related to your condition or something completely unrelated.

Find ways to manage your condition: Proper management of your condition is key to being able to live a full and active life. This may include following a specific treatment plan, making lifestyle changes, or finding ways to cope with any symptoms you may experience.

Seek support: It is important to have a strong support system in place. This could include family, friends, or support groups for individuals with your specific condition. Having people to lean on can help you navigate the ups and downs of living with a chronic illness or rare disease.

Practice self-care: Taking care of yourself is crucial when living with a chronic illness or rare disease. This could include things like getting enough rest, eating a healthy diet, and finding ways to relax and reduce stress.

Find joy and purpose: It is important to find activities that bring you joy and a sense of purpose. This could be a hobby, a creative outlet, or volunteering. Engaging in activities that bring you happiness can help you stay positive and motivated.

Don't be afraid to ask for help: It is okay to ask for help when you need it. Whether it be with managing your condition or with everyday tasks, it is important to not try to do everything on your own.

By following these tips and seeking support when needed, you can live a full and meaningful life despite the challenges that come with a chronic illness or rare disease. Remember, it is important to focus on the things that bring you joy and purpose and to not let your condition define you.

Want to know more about advocating for your child or dealing with a rare disease? Follow along over at Instagram.