Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Relationships
One of the most difficult aspects of having a chronic illness is managing relationships with other people. Any illness, but especially a long-term one, generates profound effects, not just on the person afflicted, but on friends, family, partners, and even clinicians.
People are social animals; we cannot live in isolation. Yet, how do we maintain social ties when we are too ill to interact with people? How do we explain the illness to them in a way they can understand? And, how do people who love and care about someone who is ill stay connected?
These are questions which trouble all people with chronic illnesses. But they are especially significant when the illness is poorly understood by most people, and when there is a stigma associated with it.
Friends & Acquaintances
Many patients have said that having a chronic illness "shows you who your real friends are." Much to their dismay, people who fall ill with fibromyalgia find that after the first acute phase of the illness, many of their friends desert them.
In most cases, people who have no experience with long-term illness simply don't know what to do. They may feel powerless when they cannot help you, and so they turn away. Or, they may not have had anything other than a superficial social relationship with you to start with - one that is maintained by attending events, or participating in a mutual interest together. Once you fall ill, that aspect of your life quickly falls away - and so do the people associated with it.
But, the hardest thing for people who are ill to deal with is not when friends turn away from them, but when friends make judgments.
There is a tremendous stigma associated with having ME/CFS. It is an illness that is popularly regarded as being "all in your head." People who are ill are even accused of malingering, or faking their illness. This can not only end a friendship, it can have a ripple effect of making patients doubt themselves.
A survey conducted in 2014 by Dr. Don Baken, a clinical psychologist at the School of Psychology at Massey University in New Zealand, found that patients often felt embarrassed by their physical limitations; a third felt embarrassed about the disease itself.
What this study shows is that popular misconceptions about the illness make patients feel stigmatized. As a consequence, if they are somewhat functional, they may feel reluctant to tell people that they are ill. They will offer socially acceptable excuses when refusing invitations, such as "Sorry, I'm busy that night." This has the effect of creating a habit of "faking it," or pretending to be well.
Patients who fake it often find themselves doing more than they should to please others, or to satisfy others' perceptions of them. This is particularly true of people who have led active social or work lives before falling ill. Pretending to be well sets up an almost intolerable internal conflict, because the more an ill person fakes it the more ill they become. But, on the other hand, if you are honest, you risk unwanted, and uncomfortable, commentary, such as "But you don't look sick," "You just need to work out," "Have you tried...?"
How to Cope
There are a number of ways that an ill person can give enough information to friends without necessarily risking a conversation that involves a lot of advice or tactless comments.
- If you really must say that you are ill, you can say that you have been diagnosed with a "neuroimmune illness." This puts the onus on the physician, not the patient. It also deflects commentary about "chronic fatigue." If people want to know exactly what that illness is, say "myalgic encephalomyelitis." In the U.S., nobody will know what you are talking about, which will avoid further questioning. If you are living in a country in which ME is used as a diagnosis, simply say "It's complex."
- Offer information on a "need to know" basis. Don't talk about your illness unless it is necessary for maintaining a relationship that you value. What this means is that you may have to cull your social relationships, limiting your contacts to people you have firm friendships with, and who are supportive and understanding
- Don't feel obligated to educate people you don't know well. You are not a PR person for ME/CFS, so don't engage in conversations about the illness with recent acquaintances. This may seem like sheer avoidance - and it is! However, avoidance does not imply cowardice. You must always keep in mind that your health comes first. Conversations that make you feel defensive or misunderstood do not improve your health.
Is there love after ME/CFS? This is the question Roger King asks in his book, Love and Fatigue in America. King's book is about his search for love - a quest that took him from one coast to the other - while he was ill with ME/CFS. His account is humorous, but it is also honest enough to strike a chord with anyone who has tried to maintain a romantic relationship while ill.
Maintaining a romantic relationship is difficult even when people are healthy. But, when a person falls ill with a chronic disease, the strain may prove impossible to handle.
Like friendships, ME/CFS shows you how strong your relationship is with your partner or spouse. Dr. Cheney once said that if the relationship was good to begin with, it would survive the illness. But, if not, the pressure would be more than the relationship could bear - especially if the person who falls ill is the one who is supposed to carry most of the weight. If you have been cast in the role of the "strong" one, your partner may not be up to the task of caring for you.
How to Cope
It is sad, but sometimes romantic relationships have to go the way of fair weather friends. But if you are committed to an honest relationship with your partner or spouse, there are ways to strengthen your bond, even when both partners are ill. (Sadly, sometimes both partners have contracted ME/CFS, or while one person has ME/CFS, the other may have a different chronic illness.)
Here are some things you can do to help preserve your relationship.
- Avoid blame. Even if you don't say it, your partner may feel that he or she is not doing enough for you, or may even feel he or she is contributing to your illness. You can avoid this by explaining - gently - that you cannot do things with him or her, rather than attempting to keep up your previous activities, relapsing, and then blaming him or her. Take the lead by including your partner in planning around your limitations.
- Be honest. If you are in terrible pain, and must weep, go ahead. But try not to shut your partner out. Don't be afraid to cling to them.
- Acknowledge their help. Your partner may not always know what to do or say to you, but he or she is trying hard to care for you. Say thank you. Let them know how important they are to you.
- Acknowledge their pain. When you see that someone you love is in pain, you feel it as well. Your partner is suffering along with you. Even if you are ill, you can comfort them.
- Ask for help. To reduce some of the burden on the caretaker, it is important to ask for help from other sources. This can be as simple as having a friend help clean the house or prepare a meal. When the person who cares for you sees that there are others who can also help, it reduces the strain on your relationship. Caretakers suffer from isolation too.
- Sex is implicit in a romantic relationship. But how do you convey to your partner that you are too ill, or too tired, without hurting his or her feelings? The truth is that honesty is the best policy when it comes to sex, whether you are ill or not. Even if you are healthy, you should not engage in sex to spare someone else's feelings. In the case of severe illness, the desire for sex is eradicated, no matter what kind of illness you have. Your partner should realize that. But, if you are on the mend, but not up to doing everything you did before you became ill, you can find ways to express physical love and affection without pushing your envelope. The important thing is to have open communication, and to express love.
Relationships with Children
One of the hardest things to bear when you are ill is the effect your illness has on your children, especially if they are young. Children depend on their parents, not just for love and support, but for their survival. Young children may feel more than abandoned when their mother or father is ill - they may feel as if their very existence is at stake. They will be frightened and confused, and those feelings will manifest themselves in ways that may be hard for you, as a parent, to handle.
As a parent, your responsibilities do not stop when you are ill. And so, even though you are ill, you must continue to support them, and show that you are still their mother or father.
How to Cope
- Guilt. Feelings of guilt are inevitable when you cannot care for your children as you used to, especially when you see that your illness is causing them to suffer. Do as much as you can for your children, but only when you are able. If you over-extend yourself, you will only become more ill, which won't benefit you or your children.
- Don't explain too much. Your children may be worried that you are going to die. If they are young, reassure them in terms they will understand. You can say that you are sick, just like when they had the chicken pox or flu. If they are older, you can explain more, and you can invite them to help. But, keep in mind that with children, while it is important to show them that they can help, you do not rely heavily on them. Even older children need to see that you are still in control. Ask them to help in ways they can handle, and that allow them to feel as if they are neither helpless bystanders, nor responsible for your welfare.
- Show your children a great deal of love. Simply holding a small child will help allay their fears. Lying next to them and telling them stories, or listening to their own tales also helps confirm that nothing has fundamentally changed. With older children, ask them how their day has gone, or what happened at school. When communications are normal, physical limitations take a back seat. Even if your child is upset with you for being ill - and this happens quite often - you can still talk to him or her.
When Your Child is Ill
There is nothing worse than watching your children suffer, and if they are very ill, your heart will break on a daily basis. The heartbreak becomes even more terrible if you are ill yourself, and truly understand the kind of pain they are suffering.
It is not uncommon for a parent and a child, or even several children, to have ME/CFS simultaneously. While some people consider this to be proof of genetic involvement, it could just as easily be exposure to the same pathogen. In either case, you, as a parent, must not blame yourself for your child's illness.
When a child contracts a serious illness, responsible parents feel as if they have somehow let their children down. Mothers will frequently go back to their pregnancies. Was it something they took, or ate, or were exposed to that set their child up for this illness? Was it something in their genetic code that they passed on? How did they fail to protect their child?
While all of these questions are natural, they are fruitless. ME/CFS can strike anyone, at any age, of any race or ethnic group, at any time. During the Lyndonville, NY outbreak that occurred between 1985 and 1987, 200 people were affected. Thirty-six of those were children. Their parents had done nothing wrong, in fact, in most cases, one of the parents was also affected. They were simply in the wrong place at the wrong time.
What You Can Do
- Don't blame yourself. Your child will realize this if you do, and it will make life harder for him or her.
- Become your child's advocate. Most school systems do not consider ME/CFS to be a "real" disease, or don't acknowledge that it can strike children. School officials may say your child's illness is psychological ("school phobia"), or will refuse to uphold the provisions of the Americans with Disabilities Act, or other national governmental mechanisms that are in place for helping ill children. You will have to fight for your child, even if you are ill yourself.
- Don't hold your child to previous standards. "You can't see your friends until you do your schoolwork" is a phrase that must be abandoned. It is more important for your child not to feel isolated than to complete homework.
- Don't let your child see that you are distressed because he or she is ill. In the case of children, honesty is not always the best policy. Try to be their rock in a stormy sea. They need you to be calm, competent, and in control, because they aren't.
Relationships with Doctors
Unless you have the good fortune to be under the care of a physician who is experienced with ME/CFS, your contacts with doctors will be among the most stressful experiences of your life. When we fall ill, we naturally expect doctors to help us. We expect them to be knowledgeable, caring, and considerate. When your doctor proves to be none of those things, and either dismisses you with a shrug, or implies that your symptoms are fabricated, it can be devastating.
But there is another side to this picture. Doctors who genuinely care for their patients suffer from feelings of intense frustration when they cannot help them. And, in the case of ME/CFS, this experience is all too common. They may feel guilt, helplessness, and a loss of self-confidence when their patient returns week after week, without having received any benefit - and in many cases, having gotten worse - from the treatments they have recommended. Doctors are only human, after all. And ME/CFS is one of the greatest challenges they will face as a medical professional. Not all doctors are able to stand back and admit they are not up to it.
How to Cope
- Don't expect your doctors to be miracle workers. Tell them you would like their support, but that you know your illness is quite complex. Ask for their expertise and cooperation.
- If a doctor tells you that the illness is psychosomatic, or that you are simply depressed and need to exercise, move on. Don't try to argue with him or her. It is discouraging when doctors dismiss you, but it is a waste of your time and effort to try to change entrenched ideas, no matter how right you are.
- If you have a trusted doctor, bring him or her educational materials. IACFS/ME has a physicians' primer. There are many good, informative articles available that will help your doctor understand the illness.
Stigma of chronic fatigue illness adds to suffering - survey
Blame, shame and hopelessness: medically unexplained symptoms and the 'heartsink' experience
VIDEO: ME/CFS and the Romantic Relationship
IACFS/ME - ME/CFS: A Primer for Clinical Practitioners
Love and Fatigue in America by Roger King
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard