Myositis Caregivers: Your life has changed, too
by Emily A. Filmore
I already knew I was sick when I met my husband, but we didn’t know, for certain, what or how serious it was. We just knew that things such as autoimmune disease, MS, Lupus, Cancer, Fibromyalgia, and others were being investigated. I knew, at that point, that I had a somewhat altered life due to the unknown malfunction in my body and I was honest about that with him from the beginning. But sometimes I wonder if he really understood the magnitude of what he was getting into.
I was finally diagnosed a year into our relationship, and I worried he would leave me. As a Caregiver and spouse, his life is drastically different from how it would have been had he married a “healthy” woman. I’ve asked him many times, since, if he regrets our life, the toll my disease has taken on our emotions, finances, activities, the state of our house, or our daughter’s fears about becoming sick. He always answers that he loves me and we have made a beautiful life in spite of my illness; and apart from wishing I didn’t suffer, he wouldn’t have it any other way.
November is National Family Caregivers Month. This is our time to celebrate you, our Caregivers, and acknowledge all you do.
Myositis Support and Understanding supports Caregivers and offers a Facebook support group for Family and Friends at: Facebook.com/groups/myositisfamilyandfriends. This group offers a great opportunity for Caregivers to share ideas, understanding, and emotional support.
We know you sometimes get frustrated and just don’t know what to do, say, or how to act when Myositis takes its toll on us. So, here is some straight talk about how, when you are a Caregiver, Myositis might change your life and what you can do to help your loved one and yourself.
Outings are shorter
When people with Myositis get tired, they get tired fast. You may think that we are doing fine. Heck, we probably think we are too, but then WHAM-o out of left field comes the drop-to-the-ground-and-sleep-in-the-middle-of-the-park fatigue.
What can you do? Help us realize our limitations. Don’t hover or try to restrict us from attempting activities, but watch for signs of impending exhaustion and weakening. Ask us if we want to keep going, or if we’ve had enough. Have contingent plans for when outings don’t turn out the way we’d hoped. Try not to get frustrated at us, but admit that you are frustrated for and with us. When my husband and I recognize that I am getting drained…and are able to stop what we are doing soon after, my recovery time is much shorter. His ability to be flexible, even when he doesn’t want to, spares me from so much shame at the way my body refuses to act the way I desire.
Doctors and medical terms become a regular part of life
Myositis patients become very well versed in their disease(s). We are able to have informed, intelligent conversations with our doctors because we see them so often and we do our own research (whether that is always a positive experience or not). We feel we have to advocate for ourselves since treatments are so elusive and vary in effectiveness. We also know our bodies better than anyone else and can sense changes much sooner than the typical person. We may ask you to go along with us to appointments for moral support, as backup, co-advocates, or to help us remember what was said. As our Caregivers, even if you never wanted to study medicine, you will become more knowledgeable about medical procedures than you ever imagined.
What can you do? Advocate for us (the patient). Help us to communicate with doctors when they don’t seem to understand or listen. Learn about our diseases so that you will not be surprised when new symptoms arise. Be empathetic when we don’t feel well. Support us when doctors treat us unkindly or unfairly. And…never minimize our pain, whether emotional or physical. Just because we look normal on the outside, does not mean that our bodies are functioning correctly. We need to feel heard and supported because emotional stress can add to the demands on our bodies.
Finances might change
Part of the reality of spending our days exploring our medical options includes financial repercussions. Unless living in a country with free medical care, medical bills can pile up causing an enormous amount of stress and strain on top of the worries about health concerns. In addition to the medical bills, we may experience a loss of the ability to work or decreased work hours. As our family members and partners, Caregivers will feel the financial stress right along with us.
What can you do? Reassure your partner that you do not blame him or her for the financial worries. Give comfort that you see the medical bills as inconsequential (no matter how large) compared to your loved one’s health. Be understanding about his or her limitations with having gainful employment. Work together to have a creative budget to account for medical bills, both in the present and in the future. Advocate for and with your partner to get financial assistance from government disability programs if available and appropriate. Remember that your loved one didn’t choose to be sick, and would most likely give anything to be well. Relieving them of guilt about financial woes will help them concentrate on their health.
Dealing with children’s fears
Part of having Myositis, and really, any chronic illness, is how it affects our children. We, the patients, lie awake at night worrying about how our children are dealing with seeing us so sick, the hospitalizations, the medical treatments, the side effects, etc. We don’t want our children to suffer because of our health. If you are a Caregiver for your partner, and you share children you may feel that you have an extra burden of insulating them from how sick the other parent is as well as the additional tasks you do for normal, daily child-rearing.
What can you do? Caregivers can lend extra support to children, assuaging their fears, giving them special one on one time. You can work toward giving them as normal a life as possible by arranging play dates with trusted friends and/or joining them in activities. It might even be beneficial to coordinate activities in which your partner will be able to participate.
When they are younger and whenever possible, you may try to shield them from seeing the uglier parts of the disease. But, children are very observant and intuitive, so even if we try to keep our adult issues from them, they often are aware anyway. Parents are children’s entire worlds. So maintaining honesty, albeit somewhat guarded, along with allowing them to safely voice their concerns becomes very important so that they don’t feel lied to and/or left out. Expressing and showing love frequently and listening to your children will help them feel more secure. You may not be able to change the actual disease and its processes, but you can help your children’s understanding and experiences of it with love, openness, and understanding.
More responsibility at home
As patients, roles as parents and spouses can be impacted negatively as we are unable to fulfill our normal, daily activities. Some days we may function “normally” while other days we need help getting dressed. Sometimes it may seem that a Caregiver is shouldering most of the family responsibility, both in taking care of the Myositis patient, and in functional family obligations such as housework, grocery shopping, and child rearing; this may even be in addition to being the main breadwinner, providing financial stability for the family, etc. It would be very easy to begin to resent your partner, the illness, and his or her inability to fully contribute to the household.
People with Myositis want to live normal lives. We wish we were always more self-sufficient and stronger. We often feel useless, disappointed, disappointing, and cheated out of a normal life. Sometimes, the weakness, fatigue and/or pain are more than we can handle and the regular daily activities are too much to bear.
What can you do? If you find yourself in this situation, as a caregiver, I invite you to practice empathy toward your loved one. Put yourself in his or her shoes and imagine how frustrating it is to have those limitations. Think of a time you felt completely out of control, sick, or helpless and then imagine how your loved one feels that way much of the time. Understanding that feeling can go a long way toward making the extra duties you take on feel like a gift you are giving to your loved one, rather than a task. Tell your loved one how you feel about them, why they are important to you, and the things they do that improve your life. When we start to feel useless and as if we are not doing “enough” to contribute to the family system, heartfelt reassurance from you, our partners, will be so uplifting.
Some possible, practical solutions you might want to try to reduce stress on your time (I know these may not all be feasible for all people):
- Change work schedules to accommodate your family’s needs.
- Inquire about telecommuting and/or flex hours to be home at more crucial times.
- Ask friends and family for help when you are not available due to work and other obligations.
- If possible, consider hiring house cleaners, yard people, part-time babysitters to help your partner with tasks when you are away.
- Look into home-health care programs to see if your partner qualifies and could benefit.
- Enlist the assistance of your children (as they get older) to do more chores to help both you and your partner.
- Make alterations and accommodations to your living environment to assist your partner in getting around and functioning while you are away. It might help to put pots and pans in cabinets that are more easily reached. Set up a small table near the laundry room so that we can still fold laundry even if we can’t carry the baskets to other parts of the house. Create a comfortable resting area near where the rest of the family gathers so we can still participate. And in some cases, you might even consider even looking for different housing if there are accessibility issues in your present home due to doorway width, steps, location of bathrooms, etc.
Let love be your guide, but allow yourself to grieve
Caregiver burnout is a huge concern with a Myositis patient in the household. Caregivers give to others and take on so much worry, that it can be overwhelming. We, the Myositis patients, care about your health and your state of mind. We want you to be happy and healthy. We are also concerned about being abandoned because of our disease and wonder how we will manage if you are gone, for any reason.
What can you do? If you are reading this, you are obviously committed to helping your loved one and want what is best for him or her. Begin thinking in terms of letting love be your guide. That may mean choosing not to criticize your partner for limitations, it may mean picking up more slack at home, it may mean putting on a brave face for your partner, but it can also mean being truthful about your worries while being kind. It might mean consoling your partner and expressing your love in new and different ways. And yes, it means allowing yourself to grieve the loss of a “normal” life as you envisioned it. We know that you have taken on more than your “fair-share” in the relationship and it is important for you to know how much we appreciate you, even if we don’t always voice it.
Above all, taking care of yourself (regular medical checkups, taking breaks, seeing friends, getting massages, going to movies, praying, meditating, exercising, etc.) is very important for your mental and physical health. You will be more equipped to care for your family and your loved one when you feel fulfilled, safe, whole, and cared for yourself.
On behalf of your family member, I want to say thank you for all that you do to care for, love, and support your loved one. Our lives are brightened immeasurably by your existence.
With Love and Appreciation,
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register