Something else that struck me from my recent interview with D-psychologist Jessica Bernstein was her observation that "we diabetics tend to not see ourselves as part of the larger chronic illness community — which is unfortunate because we miss out on a lot." I am sure she is quite right. And yet...
It's simply human nature to listen to that nagging little voice that says: "Unless somebody is living with MY disease, they can't possibly imagine what I go through!"
My 'left brain' just knew this couldn't be 100% true. So I decided to reach out to Laurie Edwards, a well-known patient blogger at A Chronic Dose and journalist who lives with multiple chronic conditions including PCD, bronchiectasis, and celiac disease. Laurie is also the author of a great book called Life Disrupted, which I reviewed here a while back.
Here is what she had to say to us PWDs:
- On what we share: Many of the biggest challenges in living with illness — acceptance, control, guilt, survival, etc. — are universal and do not depend on disease-specific symptoms. In this way, we're all in the same boat. (As a rare disease patient who doesn't know anyone in real life with some of the same conditions, I can certainly attest to this.)
- On 'exposing ourselves': For younger adults with CI, we face similar issues in disclosure: when/how to tell significant others, employers, etc. Whether you have cystic fibrosis or arthritis, the central issues of vulnerability and exposure remain the same but sometimes we have to be honest even when it's uncomfortable.
- On mutual respect: No one has the market on suffering. It doesn't matter whose pain is worse, whose flare is the longest, or whose infection is the most serious — "competition" among patients doesn't get us anywhere.
- On control: Control is a huge part of anyone's life with CI. Illness demands a lot of time, energy, and attention, and it's hard to resist the urge to push back against it when it becomes overwhelming--but doing that only costs us in the end.
- On frustration: Chronic illness is predictable only in its unpredictability — just when we've figured things out and are relatively stable, the situation can change in an instant. We can't beat ourselves up over that.
- On living your best life: Don't feel hesitant about doing the things you need to do to manage your disease in public or asking for accommodations. We all have different needs and what's important is that we do what we can to live the best quality of life possible.
Excellent observations, all.
As an addendum, I present to you all a Recommended Reading List from Jessica Bernstein, on helpful books about living with (any) chronic illness:
The Rejected Body by Susan Wendell
The Body Silent by Robert Murphy
The Mindful Way through Depression by Mark Williams, John Teasdale, Zindel Segal, and Jon Kabat-Zinn (although the title says Depression, it's applicable to everyone coping with life)
An Anthropologist on Mars by Oliver Sacks
Plain Text (the first chapter) by Nancy Mairs (or anything else by this author, who has MS)
The Healing Wisdom of Africa by Malidoma Patrice Some
Enforcing Normalcy: Disability, Deafness, and the Body by Lennard J. Davis
"Diabetes May Create a Chasm Between Patient, Doctor," LA Times article by Jessica about the myth of control
(Editor's addition)The Five Gifts of Illness by Jill Sklar
Here's an idea: beyond reaching out to other PWDs, try connecting with someone with another chronic illness real soon. You might just be surprised how well they understand you.