Cheryl Jackson lived most of her life not knowing why she was chronically ill. She had recurring sinus infections, bronchitis, and pneumonia. In her 40s she experienced GI issues that forced her to see doctors and ultimately led to a diagnosis of CVID in May 2013.
“It was good knowing I had a diagnosis,” she says, “but it was difficult getting people to understand how I lived most of my life without even knowing I had this.”
Throughout her journey, Cheryl picked up on a few lessons which she shares through the Immune Deficiency Foundation‘s Reel Stories. Among the highlights?
“Don’t be afraid to ask questions about different therapies.”
Cheryl started treatment with a once-weekly subcutaneous infusion which she was able to administer in her own home. But because she travels frequently, she eventually switched to a once-monthly infusion. That wouldn’t have happened if she hadn’t been willing to ask her doctors about options that fit better with her lifestyle.
Now, let’s a take look at some of Cheryl’s other tips:
- Keep a positive mind – “That’s difficult, but always keep in mind that it could be worse. There are other people with greater issues, so stay focused on the fact that you can do this.”
- Having PI is a game changer, not a life changer – “I lived 43 years not knowing I had this disease.” Just because Cheryl now knows why she was chronically ill, that doesn’t mean she needs to let CVID hold her back any more than it did before.
- Always maintain a good relationship with your doctor and the staff – It goes back to what Cheryl said about treatment: don’t be afraid to ask questions. And having someone you can reach out to any time of day or night, or who you know will promptly return your calls, can go a long way towards peace of mind.
- Keep notes – Tracking symptoms can be a good way to help with a diagnosis, but even after diagnosis it’s a good way to monitor the effectiveness of your treatment. What side effects do you experience? Are your symptoms actually improving? If you write it down, you don’t need to guess or try to remember the next time you see your doctor.
- If you don’t do it yourself, no one else will – “Take care of yourself, be an advocate. This disease is very rare and not a lot of people know about it.”
