• Gail Nash

    hi- thanks for writing this article. I’m hoping my ‘significant other’ will read it, too, because he’s been taking care of things for a few years now as i’ve tried to adjust to the limitations that my chronic illness brings. I didn’t “look sick enough” to the SSI judge last year and 10 months after the last appeal, i was denied again and have to reapply. So for 2 years, my partner has been paying the bills, doing the heavy lifting and more of the general chores. He even took care of my daughter when she had to move back for a few months. I have asked him repeatedly how he feels about it and he’s said that it’s fine, we’ll do ok. Then suddenly this week (after months where his patience has been nil), he’s said, in a non-committal way, that he’s not interested in being caretaker into the future. Besides feeling really depressed that love is NOT enough, i’m starting to panic about starting over. At 60 w/post-polio syndrome which includes fibromyalgia and chronic fatigue, and a serious debilitating back problem, i can’t get a job. I worked for 40 years but couldn’t get SSD. I’m picturing being on the street, having to sell the house, or (blank) nothing. I have no back-up plan whatsoever. He’s only 50 and that’s never mattered until now. I’ve always tried to be as loving as i could be, i’m a hyper-vigilant person and watch his moods but i’m also a hard headed woman, and after being depressed and worried, i’m angry. AT the illnesses, AT the guy, AT myself for not knowing what to do. The one thing keeping me from becoming the funny little cat-lady on the street here, is him. He’s given me not only financial support these past few years, but emotional support because i don’t see people often, and physical support sometimes. I hope MEM got thru’ her situation ok. And now i hope i do, too.

  • Alan W

    I am so glad to find articles like this. I am the caregiver for my 36 year-old fiancee, who has Pulmonary Hypertension. So much of what is written here is invaluable.

  • http://followhimfaithfully.blogspot.com Valerie

    I am delighted that I found this website. A friend told me to read the Spoon Theory just today. Incredible stuff here! My husband has been disabled for several years due to a genetic disorder and we have struggled through countless challenges along the way. Learning to accept the limitations, the role reversals, the financial stress, coping with caregiver syndrome have been very real. (Both our daughters have had major hospitalizations as they, too, suffer like their Dad. Plus, I had the role of care giver during my father in law’s last year and during my mother in law’s battle with Alzheimer’s. So I’ve had to care for everyone at one time or another!) There is so little information for couples coping with a chronic illness. I recently heard that 75% of couples living with a chronic illness or disability will call it quits. That is so sad. Thank you for this great article.

  • Vincenzo

    I have been a loving husband and caregiver for over 14 years to my beautiful loving wife Rosie. I know that an illness can be stressful but compassion, commitment and communication has been the anchor and strength of our relationship. I truly do not understand a spouse who walks away especially when the other partner needs you the most. Despite all challenges and obstacles thrown our way I look forward to many years walking side by side with my partner and best friend enjoying every beautiful sunset offered for our viewing. She is truly my soul mate.

  • MiniMorg

    This was a very interesting article. I have been in a relationship with my significant other for almost 3 years and was diagnosed with fibromyalgia and ME a year ago.
    Our relationship was tested at first as it was very hard for both of us to accept.
    But now we are stronger than ever and I could not thank him enough for the things he does to help me every day whether its physical or emotional support.
    Granted that we both still live with our parents and because I am working only part time it can be frustrating as saving up to move out is practically a no no. He is almost 22 and I am 24.
    Just as this article says I try my best to be receptive to his needs too, i.e frustration when he cannot take my pain away, or we have to sacrifice some days out etc.

  • http://browserlife.blogspot.com/ Karen Brauer

    There are some inspirational stories here. Thanks so much for sharing them.

  • Carolynn

    Thank you for this one. This affected me more than any other article here. My husband and I met when we were young- 14, in perfect health and perfectly adorable. We got married at 19. When we were turning 33 together, I had a series of surgeries that changed our lives.

    He has been my care giver through all of this mess. When my abdomen had to be opened, twice, and left to heal as an open wound (about 5 inches deep by 5 around) for 6+ months each time, HE changed my dressings twice a day. That is more than a year’s worth, twice a day every day, of changing my gooey belly dressings.

    The chronic abdominal pain I am left with has changed us a lot. Sex. Our abilities to just go out and play. Simply riding in the car does me in- bumps in the road are evil!

    What I have learned, if I had any doubts before, is that he truly loves me. This is not what either of us expected when he signed on as Husband. But it’s been rare that he loses patience. He has taken care of me, and stepped up with the kids and cooking. Even through losing our home, he’s been 100% on my side. I thank him often, but there were things in this article that reminded me of things I owe him- apologies when I lose patience, dates, more vocal appreciation.

    Thanks for writing this one. :)

  • Karen Vasquez

    So much ueful information. Thank you for posting!

  • Finny

    That’s funny…the husband and myself never went on dates until after we got married! Now we have date nights at least once or twice a month, depending on money. (Neither of us can drive, due to vision, so we depend on public transit.)

  • JUDY

    this sounds like i could have written this! my life partner, who i now live with, is my ex-husband. we both have multiple medical problems, and take care of each other. he is cranky some of the time, kind some of the time, and a LEAVE ME ALONE some of the time. i just gauge the day by how i feel, and then find out how he is that day. we have been together for forty years, and we have seen each other develop new medical problems over the years. yet, i can’t see me living with anyone else. it’s true-when you understand each other’s limitations, it isn’t any easier, but it enables one to cope. many thanx for listening! GOD bless! judy

  • http://www.thisbearbites.com Pamela Glazebrook

    Your words could’ve been written by me.
    We married my senior year of high school. I had turned 18 the week before, he was 20. We hunted, hiked, camped,and had our first child a year and a half ofter marriage. Bad pregnancy – what ever could go wrong just about did. I almost hemorraged to death after having him. In the end I managed to give hime a sister and lost three babies. Develpoed PID as a redult of poor medical care and hit menopause at 22 and had a hysterectomy at 23. Final diagnosis was Adenomyosis. My Drs had labled me a hypochondriac in high school because of all my complaints. When my final pathology came in, my doctor at that time did apologize for all of the medical people who had ignored me for so long. The man standing beside me had never doubted me. It is why we tried to have our family so young. I didn’t feel I had too many child bearing years left. Let’s hear it for women’s intuitions!
    We adopted a child in our mid twenties and were thinking of adopting another, I had to go through extensive carpal tunnel surgeries on both arms. (hands, wrists, and elbows) I was just sailing along again, when I ended up with a bone tumor in my right foot at age 29. Developed RSD as a result, which spread through out my body. I lost my livelihood a hair and tanning salon. It was then my husband’s company announced they were closing. I was still facing several bone grafts to repair what the tumor had done. We were as stressed as any couple could possibly be and my husband had to go through a career change, we had to leave the communites we were raised in, and our dream house for his new job. I hit major medical (over $100,000 in medical bills) every year for three years straight.
    Add Hypothyroid, Fibromyalgia, and my gall bladder had to go. I developed Adhesions as a result of all my previous surgeries which caused my IBD. Had to have surgery to fix some of that damage.
    I had rehablitated through everything to get a new career path started. I almost made it a decade when my body decided it was done. My RSD was maxed out and they thought I had MS or Lupus. The Drs decided it was neither, then it was Lupus and then not. My liver and kidneys are in trouble according to tests. After several years I have my true diagnosis of: Sjoren’s Syndrome.
    We raised our children through that turmoil and they learned just because life is falling down all around you, it doesn’t mean you give up on each other.
    My husband has added a little medical excitement, but compared to me he is pretty healthy. I did come within hours of losing him two years ago – he went sepsis from MRSA.
    We are empty nesters and grandparents now. I am retired due to my disabiltites and we are trying to decide the best path for the rest of our life. What to do for my disabilities and his retirement.
    We didn’t get to live “succesfully” even though my husband is very good at what he does. We have never had a real vacation. Instead, we paid medical bills. We are still each other’s best friend and we love each other dearly. Have we always liked each other? Of course not! Has he always been the perfect illness companion? No, but his intentions were good. We have survived because we always understood that the love was always there.

  • http://browserlife.blogspot.com/ Karen Brauer

    Unfortunately, not all relationships survive chronic illness, not even the ones that were strong to start with. Some might have fallen apart after 10 years or 20 even with both partners healthy due to a variety of reasons. My first marriage was to a man who had zero tolerance for illness or anyone he considered weak. I initiated a divorce when I discovered that the reason he had no friends wasn’t that he was shy; it was because he was cruel. I am grateful and lucky to have met the man who is now my husband but also must acknowledge that our marriage works because we BOTH are invested in it.

    I am truly saddened by the relationships that break up. But if you have done all that you can and your partner still calls it quits, I hope you realize that it does NOT mean that YOU are a failure. And if you find yourself in an abusive situation, of course get out ASAP.

    By writing this article, I was hoping to encourage those who are just starting out or maybe those who believe they can’t possibly be in a love relationship if they are sick. Many of my friends are going through divorces right now or have done so recently, and I had been asked on more than one occasion why I am happily married despite the odds. I certainly don’t have all the answers and have at least as many flaws as anyone else, but I hope that by sharing what has worked for me it might provide a positive note. I just haven’t seen that many positive articles on relationships and chronic illness and was hoping to add a little more balance.

    There are no guarantees in life. But if you have truly done your best, hold your head high.

  • Sandy G.

    After 25yrs of knowing someone, i really thought i would be growing old with him. I was wrong. When we first met, I was athletic and outgoing just like him. Playing sports and coaching were my life! We have two beautiful girls who are almost grown and i was looking forward to the “empty nest” time…
    Things change when u get a chronic illness/s. In the beginning of the diagnoses, it seemed like “we” were working thru it together. But as the years went by and the symptoms got worse, disability came, loss of income happened and “he” disappeared more. I tried all that u had stated in the article plus some, but when your “other” decides he is done there is nothing u can do. BUT, i have learned the most valuable lesson thru this all….. that life is a gift! Family comes first, and to slow down and enjoy your loved ones!! I don’t believe if i hadn’t gotten sick i would have learned this lesson. I see life differently now.
    Too bad “he” can’t see it that way. I will be ok. I will.
    Sandy

  • http://aloofelf.blogspot.com Leeloo

    This article….is spot-on. Thank you so much for writing such a succinct yet eloquent article. I loved it.

    And, it’s so very, very true. There are so many people who can take away from your words and apply those suggestions to real life.

    I had episodic migraine with aura up until 2006. Now I am chronic, and the pain and suffering are never-ending, along with chronic Epstein-Barr’s. My husband is my caregiver, and I take every opportunity I can to give him the accolades he deserves for toughing this out alongside me.

    So many people think chronic, invisible illness only impacts the sufferer, and that’s just not true if you come with a significant other, or family that cares. Everyones’ role shifts, and often the caregiver gets lost in the fray, when they shouldn’t.

    So again, thank you for writing this.

  • MEM

    My husband and I met after I got sick in 1994, so he knew what he was signing himself up for. We were that nauseatingly perfect couple that cuddled and did the chores together and discussed rather than argued. I ran the household (did what chores I could, paid the bills, was administrator of everything) and he had the outside job, which he always insisted was a great arrangement because he didn’t have to think about anything boring like making sure the gas bill got paid! We did everything textbook-right and always swore that we were going to be the ninety-year-old couple in rocking chairs on the porch… but nine months ago, just a few weeks before our fifteenth anniversary, he flatly stated “I want a divorce. I’ve been a caregiver for over sixteen years, and I can’t face doing it for another thirty. I’m done.” Out of the blue. WHAP! So even if you think you’re doing everything right, look even deeper. (And I haven’t recovered from the resulting flare yet.)

  • http://randomdaysofme.blogspot.com BD

    wow, I literally just wrote about this as I was feeling really low in my life because I was feeling like a burden or that my husband wasn’t supportive enough. Truth is, even years into my diagnosis, we are still trying to find our roles and our limits. I have hid a lot of my real pain inside for the fear of I’m not sure what, could be so he doesn’t get scared or could be so I wouldn’t appear weak or could be because I didn’t want to change the dynamic of our lives with MY disease. It’s still a work in progress and I’m still working at it. Great article!

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