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My Parents Don’t Believe I am Really Ill
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October 12, 2009 by Rest Ministries
Filed under Church Leader, Depression, Help! Q/A From the Experts, Hurt Feelings, Need to Know, Parent of Ill or Disabled Child, Person w/ Illness, Person w/ lll Spouse, Spouse of Ill Person, Support Group Leader
I am 36 and was diagnosed with fibromyalgia last year, but I’ve had the severe symptoms for about 3 years. My husband has been supportive, but my parents don’t believe I really have this illness and if I do I should just take the medicine they see on the commercials and get on with life.
I love them and want to still have some kind of relationship with them, but it is causing stress on my marriage too, because my husband can’t bear to see me hurt by them any more. -Sherry
Dear Sherry,
I’m sorry you’re hurting. Sometimes it can be very difficult for others to understand or to accept the reality of a chronic illness. Often times, they don’t realize that the debilitating affects of an illness like Fibromyalgia vary from patient to patient and that, for many, it just isn‘t as easy as “pushing ourselves“ or “taking a pill” in order to maintain the life we once led. And, unfortunately, ads from pharmaceutical companies are aimed at selling a product and don’t adequately present the varied symptoms of such a complex disorder.
I recommend a couple of resources that may help your parents gain a better understanding of how your illness affects you. One is a Fact Sheet from the National Fibromyalgia Association. And the other is an article titled, “What’s Going On? A Simple Explanation of Fibromyalgia- Making Sense of a Complex Disorder, For Those Who Don’t Have It”. The second is one of the best I’ve found and really describes how FM affects the body in simple, easy to understand terms. I hope it helps. J
Beyond that, it is important for you to do whatever is needed to reduce the stress your relationship with your parents is placing on both yourself and your marriage. I know it’s heart-breaking to consider limiting the amount of contact between you. And I, myself, understand how painful it can be not to have the support of those dearest to you, especially when facing an illness. It can feel like a dagger through the heart sometimes. But, in order to improve and maintain your health as much as possible, it is crucial to address both your physical and emotional needs. Since we know that stress exacerbates the symptoms of FM, it’s important to limit stressful situations as much as possible and to maintain positive, supportive relationships in your life.
I’m so happy to hear that your husband is understanding and supportive! That is truly a blessing! And it may be that, one day, your parents will come to be supportive, as well. I would encourage you to share these articles with them. If you haven’t already done so, you might also try writing them a letter, expressing your feelings. Explain to them what a typical day, living with your symptoms, is like for you. If you have done all you can do to try to help them understand, and they still fail to be supportive, then it may be necessary to distance yourself from them for a time. Focus on doing all you can to have a positive emotional outlook and this will help you immensely, both in managing your FM and in dealing with your parents.
Sherry, I encourage you to continue to pray for your parents’ understanding. And, at the same time, ask God to give you strength to change the things you can and peace to accept the things you can not. He can ease your hurt and help you learn to, once again, lead a joyful, productive life, even while managing the effects of your illness!
In Christian Love & Service,
Angela Dobbins, Founder
True Life Family Ministries
True Life Strategies – life coaching with hope & heart
Angela Dobbins is a Christian life coach in McKinney, TX. She lives daily with the effects of Fibromyalgia, Myofascial Pain Complex, and various sensitivities. Angela’s passion is to share God’s love with others and to assist them toward becoming all He created them to be, even in the face of seemingly insurmountable odds.
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Dear Sherry,
Take a deep breath and know that your parents love you too. They just do not understand. We live in a society wherein there is little tolerance for the unknown and long-term anything. In our society we also believe health is an entitlement wherein we go to the physicians office and he/she will fix it. As an example, if someone gets gallstones the doctor will fix it. The good news is we are also a very forgiving society. Just stay your course. Sometimes while we wait for things to happen we may just have to stand out in the rain but God is never late in fulfilling his promises to us.
Cheers,
Lisa Natasha
I feel for Sherry. My fiance and my Mom are the only people in my life who ask or see what goes on with my health. To everyone else, I am out of sight and out of mind. At various times I have been diagnosed with FMS, CFS and myofacial pain syndrome. I also suffer chronic pain due to multiple accidents/injuries to my joints, most notably my low back, but also my neck, ankles, knees and three separate pain conditions of the feet. I also have mild carpel tunnel.
I have had unwanted confrontations with family members who feel slighted by my "selfishness", most recently at my own birthday party no less. Even a sister who has FMS fails to understand me because unlike me she does not suffer multiple drug allergies and drug-induced stomach ulcers. She is on a narcotic pain control patch with multiple narcotic drugs to supplement "break through pain", all without adverse reaction even though she drinks quite liberally. I, on the other hand, don't drink at all and am presently limited to Tylenol. I'm doctor-diagnosed allergic to Asprin/NSAIDs and many narcotic pain relievers, and others I cannot take due to my damaged GI tract. My FMS-suffering sister works full time, whereas I haven't had a regular job in 11 years. I run late everywhere I go before 2 p.m. in the afternoon due to a combination of fitful sleep interrupted by worsening pain, stiffness and spasm at night, and the resulting immobility for the first half of the day that makes it near impossible to stand upright, walk or move fast enough to get out of the door before noon. My day starts off with a prescription device treatment, and an hour tethered to a machine.
The things that I have done on behalf of my church or family over the past 10 years — whether it was volunteering for a leadership position or baking goodies for birthdays/holidays — are not appreciated as my meager contributions to family and society, and I've had people deny me the joy of what little I attempt, ranging from telling me not to bother bringing a dessert I've already baked to a secular organization specializing in disability issues that I contributed regularly to replacing me with a software package. (I was their webmaster and my "notice" was when content began appearing online that I hadn't posted.) Even my longtime adult ministries pastor, after the worst of my setbacks, stated that I had no say in a matter pertaining to the fate of the ministry I had been part of for several years. I had not been in church regularly due to a serious job-related injury at that time, but even though it was no secret, not a single pastor contacted me even though I had maintained ties with several members of the small group I was in while at home attempting to recover. I tried to convey to the pastor that what the spirit desires and the flesh cooperates with are two very different things, but to no avail.
The family to which I am to marry into are similar. My future in-laws include a retired doctor and nurse, and one outright told me that my food/drug allergies, even though I am asthmatic, are "in my head" despite the fact that I did not self diagnose them. They believe that FMS/CFS is a farce — which I learned after I mentioned my sister's case, therefore I know better than bring up my own. They are regular churchgoers to which others turn, whereas even the news that I landed in the ER last Spring for severe RA-like symptoms was met with disapproving frowns and scowls. Not a single member of that side of the family asked how I was doing, and 2 minutes into the lone conversation I tactfully attempted to start with my future mother-in-law I realized she wanted no part of it.
I'm 38, childless, and unmarried to someone I've dated for 9 years. I am no longer a regular churchgoer because I have been hurt so many times by behavior that advocates mind over matter, and the assumption that if I don't have enough "mind" (character), I just don't matter. I've seen how some people monopolize small group time, insisting on being the center of attention, and by attempting to be discrete — overcompensating — I have only managed to illicit misunderstanding. One person even asked if not working due to chronic pain was like "being on vacation"! I feel compelled to self-exile to stop disappointing people and/or being disappointed. I have become hermit-like in recent years, increasingly less likely to call or email anyone because such efforts are rarely reciprocated. No one wants the reminder that life isn't fair, and I suppose I can't blame them.
I have found the mis-understandings of others to be among the most painful aspects of my similar (though less severe) health trials with CFS/MCS. Sometimes I have looked forward to the day when we all stand before the Lord and the truth of everything is known. The Lord knows, anyway. So sorry, I totally understand. I think few can who have not experienced this kind of problem. Sending a prayer for your healing, blessing, encouragement, and provision of believers who can truly love you.
Dear Sherry,
What a blessing to have the complete support of your husband, who obviously understands and sees the huge impact your illness has had on your life–when you are hurt by your parents’ misunderstanding of all that you go through, he truly hurts with you and feels your emotional pain. It is so vital to stand together as a couple, and what a wonderful example the two of you are for others who deal with chronic pain who don’t have this same unity between you. Hopefully your story will encourage other spouses to be more supportive in similar situations!
I do understand the true hurt of having parents and other family who cannot understand the true impact of one’s illness–that is a hurt that cannot be understood my others who have not experienced it, I think. I too have experienced this emotional turmoil, and your words clearly echoed my own pain. I hope that perhaps my experience can give you both some more insights and hopefully most of all some encouragement to you too. Thank you for leaving your experience on this site, I do believe that parents and spouses of others who are injured and ill will benefit by learning from your story and the responses left here.
I was injured in a car accident a year after starting to work as a university professor, and was only able to work for about 4 years in this field after going to university for 10 years to complete the requirements to work in this demanding field. It was a dream come true to be working as a professor, and I know that my parents were especially excited when I was successful in getting one of a very few competitive positions, and I know that it was the blessing of God that allowed me to work in this field that I loved so much. When it became clear that I would have to take a leave of absence from my job, I don’t think that my parents were all that keen, but I knew that my ability to work was disintegrating, and I needed the full-time specialized therapy that was only available in another part of the country, so I had to pack up, live out of a suitcase and relocate to an unfamiliar location on my own (I’m single).
Although I know that I worked as hard as I could to get better, trying a number of different and often extremely painful therapies that lasted sometimes for more than a year on a twice weekly basis, and did others on a daily basis, having a couple of surgeries along the way too, I was again in another car accident (both were not caused by me, I was either stopped at a red light or in traffic at the time), and it became clear eventually even to me that I was not going to be able to return to work, which I did grieve for a long time. Eventually I had to make a choice and decide that it was important for me to accept that I had truly done all that I could do, and that if I couldn’t return to work that it was NOT my fault, even if my parents and some of my family did blame me and saw me as lazy and not trying hard enough to do this. I had to accept that it was important to look at what I did have left in the life that God had given me, and that I needed to find happiness in that new life.
At one point, I had returned to the area where my parents and some of my family lived, and their negative attitude towards me hurt me to such an extent that I was eventually forced to move away and to relocate back to the area where I had been treated, to start a new life on my own, even though I was chronically ill and in a great deal of pain and exhaustion. God truly opened that door for me to relocate, and I was blessed to always feel His support and His love for me. When I had days where the pain was intolerable, I was considered lazy if I wasn’t up and moving when others would normally be up, and it became clear that as an adult, my responsibility was to taking care of my own health and well-being, which for a christian in many ways felt like I was being self-absorbed. When my family would come for visits, they would expect a level of entertainment that would leave me in a horrible flare-up that would often last for weeks, sometimes months, but of course they didn’t see the after-effects of their demands during their visits.
I didn’t make the necessary changes in the way I entertained them during their visits for an extended time, and really did myself no good by continuing to put my health in jeopardy out of guilt and feeling like it was my responsibility to put my family before my own needs. When I chose to set boundaries, I saw what progress I had made relationship wise immediately disappear, and that was devistating for me. I had to learn that I had to put the needs of my body before those of my family at times, although my friends would probably say that I still do too much when they come, although I don’t do nearly what I used to do.
Sometimes you do have to accept that as much as you love your family as I love mine, that perhaps they may not come to understand the complexities of your illness, but you need to have the strength of resolve to know that you truly are ill, you are doing as much as you can, and that God never expects you to do what is going to hurt your health to satisfy the unrealistic needs of anyone, even family who are supposed to love you. Parents have dreams for their children, and when you as an adult child of theirs becomes ill, perhaps they see some of their dreams for you die, and because of that grieving process, they become wrapped up in that, and lose sight of what you are actually going through. Of course the other huge issue is that so much of chronic illness is invisible to others–they cannot see your pain, your exhaustion, and your other complex symptoms, but you know they are there.
One possibility is to have your parents talk to your specialist or family doctor, who can explain that what you are going through is real. Sometimes that may help. In my case, I learned to seek support from the family members in my family (they were outside my immediate family) who did understand and who did support me. My situation has been ongoing for almost 20 years, and I have had to realize that I will likely never have the true support or understanding of my family, and that saddens me, as being on my own, I don’t have a spouse for support as you do, but I do have close friends who also suffer from chronic illnesses, as well as other family members who have really stepped up to be there for me. God does provide support, it just may not be in the way that you would expect or even choose.
I will be praying for you and for the understanding of your parents, Sherry. It is my hope that over time they will realize that what you are going through is real whether they can see it or not, and that they need to be supporting you too. Educational sites explaining the complexities of your illness (I too have been diagnosed with FMS amongst other conditions) are always helpful. We so often feel so guilty ourselves about not working and “contributing” in a normal way by working, and this lack of support just feeds into our own feelings of guilt (that may not be true in your case, it was in mine). It is so important to rest in the assurance that although this is not the path that you’d choose, that it is what God has for you right now, and that He will honor you in what you are able to do, and that He understands above all else. I had very supportive grandparents who are now with their Savior, but my grandmother would say that if she didn’t know that God knew what I was going through and that He loved me even more than she did, that she didn’t think that she could stand watching me go through so much pain and tough times with this chronic illness. Having that true understanding and wonderful love from them really helped get me through some tough times, and that memory still encourages me to this day.
Keep that solidarity as a couple and know that you are doing all that you can, and continue to pray for the understanding and support for your parents, and learn to take your support from those who are understanding and want to give you the help and the comfort that we all so need when we are going through so much. I understand your disappointment, just try to keep being loving, and if your times with your parents become very trying, you may have to limit your contact, or at least learn to know when it’s time to leave when you are in too much pain and are very exhausted–that’s when it’s especially difficult to deal with such a negative attitude.
Know that you are not alone, there are many others out here who have had to deal with similar attitudes from family, and we can all be an encouragement to others who may not have any support at all. Helping others is so therapeutic for me, and I’m sure you’d find it rewarding and healing too, probably you are already helping others in this way.
Blessings to you!
Joanne
Hello, I am so thankful I found this website Rest Minstries. I am encouraged by what people have shared about their situations. However, I do not have a husband/partner who does not understand or support me with my chronic pain condition. I do not know what else to do. I live with constant pain and headaches and are seeking treatment with my chiropractor. But it’s sad when the one person (husband) who could count on is emotionally absent and detached from their family. We have 3 children and I am a stay-at-home Mom. Thank you, Jennifer