The first sign that I didn’t have a healthy body came in my mid 20’s. I developed numbness in my fingers. My boyfriend, Jake, a medical student, was there when I went for a myelogram, a very uncomfortable test. A few months later, when I developed the first of hundreds of urinary infections, he picked up the prescription for me because I was at work.
He was by my side on our honeymoon a few years later when I noticed that the numbness had spread from my fingers to my arm and head. We watched with fear as it spread, bit by bit, throughout my body over the next few weeks.
And two months later, we were out running on a hot summer day when I lost vision in one eye. He helped me into our apartment where I collapsed from fatigue and wouldn’t be able to get up on my own for several months.
Twenty nine years later, we’ve experienced what chronic illness can do to a relationship. I would say that the only other person who truly suffered as I have with this has been my husband. But we’ve been lucky and we know it. The worst symptoms I’ve had came from diseases that have either been cured by surgery (ulcerative colitis) or are in remission from medication (multiple sclerosis).
Yes, I still live with waxing and waning issues that are so numerous it’s almost comical. But I’m also healthier at 58 than I was at 38 or 48. And that’s something we never take for granted.
Six years ago, I decided to devote my work life to improving the lot of others who live with chronic illness. I’ve put my efforts toward the intersection of career and illness because that’s what I believe I know well.
So when Donna Jackson Nakazawa (author of must read: The Autoimmune Epidemic) contacted me about the first part of a two part series that she was writing for MORE regarding illness and career (Ill in a Day’s Work), we felt a kinship in our approach to illness and life. It was too late to include my thoughts in the first article on career, so she suggested I’d be a good interview for the second one on marriage and illness.
How a Marriage Survives When One Partner Get Sick is the best thing I’ve read on the subject. Among other topics, Nakazawa explores how talking about it can help, why finding what you still have together is important and getting help when you need it can be critical.
I don’t generally write or speak about the affects of illness on my family. As you’ve probably guessed from reading this blog and my book, I’m not a private person. I have no problem describing what has happened to me in my life or how it’s felt. But that’s not necessarily true for those I love, particularly my husband. But he agreed to my interview on the topic. I could share my thoughts about us and what we’ve learned, if doing so might help others.
I hope you read the article and share it with others. I hope you’ll share with me what you think!
J.J. Fenza says
My last relationship (same-sex, & very near marriage) ended very suddenly w/o explanation when my MS symptoms started to become visible. Now they’re fully visible, and dates refuse to have anything to do with me once they find out. So I’m always looking for dating options for people in their late 30’s, looking for work at this dismal time, w/no house or amenities & some disability, etc. I don’t know where to start, as the job world/MRC hasn’t been friendly or helpful either. I’m thinking about signing up w/you, but wondering how/if you could help!!
Any information you share would be greatly appreciated! & I do have your book….
Thanks,
J.J. Fenza
617-767-3824
33 Woodman St., Apt. 2
Jamaica Plain, MA 02130
Rosalind says
I read your comments and start to feel really p—-d off! But then I think to myself, good think that last relationship ended before you got married. I know it sounds glib but you’re well rid of that person. Or the next who is thrown off by your disabilities. That said, it sounds like you do have a lot on our plate and it’s never easy to get romantically involved when you’re life is in disarray. Sounds like you need a job. I don’t know if I can help but you might start with the workbook. It’s got assessments designed for people with chronic illness.
I’ve found it takes almost a year to get a new job if you can’t use the sklls you had. I’ve worked with clients on this but takes time and patience. When you’re ready, email me and we’ll get started. There are jobs and don’t wait any longer to get re employed! Do it while you’re still young!
Julie says
Just so you know, you were just linked from Shakesville, so you may want to remove the contact information of the first commenter! 🙂
Rosalind says
what is shakesville?
cheezwiz says
thanks for sharing rosalind
shakesville is how some of us refer to shakespearessister.blogspot.com
cheezwiz says
(nothing wrong with shakesville, only that you’ll be receiving more public traffic and may want to preserve your readers’ privacy)
Julie says
Thanks, cheezwiz, I was trying to post something like that, but was having trouble with my internet connection. I’m sorry my first message was so cryptic.
I just found your blog through Shakesville, and I’m so glad I did. I have a partner with chronic health issues that haven’t yet been diagnosed, so I’m looking forward to reading more!
RachelB says
I’m over here from Shakesville. My partner has been dealing with unexplained chronic pain for the last four years. We’re both in our early 30s and getting discouraged, and I’m very grateful for the links you have posted here. Thanks, Rosalind.
Rosalind says
FYI Julie – I don’t think I can remove the address on the 1st comment?
Julie & Rachel – You should get my book ,( Women, Work & Autoimmune Disease: Keep Working, Girlfriend! – It has good info — So does my Workbook, Keep Working With Chronic Illness – both are on my blog, cicoach.com
I got sick in my late 20’s and KNOW how discouraging this is. Get help from people who understand what you’re up against – therapists & career coaches— yes iike me -but this isn’t a sales pitch as much as a plea. These ARE the years you have to wrap your head around what you CAN do – before you also have to deal with society’s ageism bias.
I have to blog on this, don’t I? I’m glad you’ve found me – keep reading and lettin gme know what you need!
Christina Gombar says
I just wanted to say that the More piece, especially Rosalind’s contribution, was phenomenal. It really tackled the tough personal issues.
Laura says
Thank you for this posting. My husband and I just celebrated our 5th wedding anniversary on August 28th. I was diagnosed with lupus in 2006, two years after we were married. My diagnosis came at a time when many of our first babies. It seemed cruel and unfair that we were learning to deal with a disease instead of welcome a baby into our lives.
We’ve made it through many ups and downs through the last 5 years, that included other stresses, job changes, a miscarriage, my decision to work on a masters degree.
This past winter, we felt like we were drowning in stress. My husband wanted me to try alternative therapies, even though I have been very healthy and my lupus is in control with conventional treatments. My husband was so worried something would happen to me, and he felt it was his job to save me. His help felt smothering and controlling, and he felt I was being stubborn and intractable for not trying the latest treatment that he had read about.We realized we needed to go to marital counseling. It was the best decision we could have made.
We realized that in 4 1/2 years, we had experienced more trauma than most couples who have been married much longer. Weekly counseling sessions, weekly homework assignments to reflect on our marriage and our emotions saved us. We still use the tools that we learned in marriage/relationship counseling to cope with stress.
I would advise anyone to find a counselor to help cope with the stress and trauma of chronic illness. Counseling saved us.
Laura says
meant to say “many of our friends were welcoming their first babies.”
Rhonda says
I’ve been sick with an undiagnosed chronic pain/fatigue condition for over 7 years, and my health has continued to decline with each passing year. My father and sister have auto-immune disorders, so I suspect I’m in the same boat. I’m a college professor. On one hand, I am grateful to have the security of a tenured teaching position – I know how lucky and blessed I am. But on the other hand, I’m terrified. It is getting harder and harder to get through each semester. I’m in a long-term committed relationship, but I am self-supporting. When I try to talk to my Drs. about my concerns, I hear things like I need to find a sugar-daddy, or I’m just lucky to have the great job I have. This is not helpful; its as if they don’t take the demands of my career or need to work seriously.
So what is the point of all this? I guess, mostly, I’m just so grateful to have read the article in More magazine, and to have found this and other resources for women who are ill. I’m looking for every possible resource to help me keep on going, without driving myself, and those who love me, completely crazy.
Rosalind says
Laura – My heart is with you on this. You’re right. You have learned more than most in a short time and it will help you manage the other inevitable life stressors. I hope that you do have a child/ children, if you want. Anything is possible if you understand what you’ve committed to and act with clear intention! Thanks for sharing.
Rosalind says
Rhonda – I often think the “undiagnosed” is the worst. Just any other unknown thrown into the mix of unpredictable illness. It’s too bad that your Dr’s respond that way. Unfortunately, they’re just people and not trained to deal with feelings — and in particular, the difficulties of chronic ilness. I absolutely understand how it feels to want someplace to turn to — and not put it all on your loved ones. That’s why I do what I do -specifically to help around career issues but it’s a “wholistic” approach,. Check out the services page on the https://cicoach.com website.
You don’t have to do this alone- nor should you.
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Wow! Thank you! I permanently needed to write on my website something like that. Can I include a part of your post to my site?
Rosalind says
go for it.
Nereida Alemany says
MS treatment is still not 100% successful. But with the advent of modern stem cells, i think in the near future we would be able to cure it permanently.*`”::
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Hollis Oosterhof says
Multiple sclerosis (MS) is a disease in which the nerves of the central nervous system (brain and spinal cord) to degenerate. Myelin, which provides a covering or insulation for nerves, improves the conduction of impulses along the nerves and also is important for maintaining the health of the nerves. In multiple sclerosis, inflammation causes the myelin to disappear. Consequently, the electrical impulses that travel along the nerves decelerate, that is, become slower. In addition, the nerves themselves are damaged. As more and more nerves are affected, a person experiences a progressive interference with functions that are controlled by the nervous system *
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Truly instructive looking ahead to coming back again.