As someone who lives with a chronic illness, I can tell you that my life is not an easy or predictable one. However, I learn what I can and cannot control, and I try to take the best care of myself possible. There is someone who makes this part of the process easier, and many who make this process easier on the nearly 7,000,000 people in the United States with chronic and rare diseases. So, who are these people? These people are our partners, our spouses, our families and friends, our caregivers. They give selflessly, they give because they love us and want us to be well, but they get little credit for the sacrifices they make. We get the support and attention, while they often sit quietly on the sidelines, sacrificing and giving unconditionally.
With these sacrifices come stresses and problems of their own. They deserve the accolades, and the support just as much as we do. These individuals have to miss events because we are ill, or need to attend them alone, longing for their partner to be by their side. They miss out on many of the opportunities and experiences that many couples take for granted. They do things to care for their partner or loved one that many people could not imagine. Surely this never ending cycle of care takes a toll on them. Caregivers struggle with issues such as anxiety, depression, and sleep issues, health issues of their own, feelings of anger, fear, and resentment, as well as grief. The grief is the grieving process of the loss of the type of relationship they had envisioned for themselves.
There are support groups for almost every type of illness, but not as many are offered for the caregivers of the chronically ill. These individuals should be encouraged to get support, whether it is a support group, individual therapy, or telling their friends and family how they are feeling and that they need help. Many caregivers keep their feelings and their struggles to themselves, which might work for them at first, but prolonged caregiving and exposure to the stress of a loved one's illness can wear them down. This can lead to their own health issues. Everyone needs help, even a helper, especially a helper.
Talking to someone can help, and a psychologist or therapist is a great place to start. When we look at the issues a caregiver faces, an unbiased third party can be a vital person to have in their lives. Working with a therapist provides a safe and confidential space to talk about and say all the things that they might not feel safe or able to say to their loved ones, or others in their lives. They would find the idea impossible or unsavory to say that they are angry at the person who is ill, that they resent them for the way their life has changed because of them. These are all normal feelings and thoughts to have, but they are the kinds of things that caregivers hold inside, leading to resentment, anxiety, and depression.
Another notable factor is that the divorce rate for the chronically ill is higher than the general population. Estimates are that the rate is 31% higher than the general population. It has also been found that divorce is more likely when the wife is the one with the chronic illness. These numbers make it sound like not only individual therapy, but couples therapy, should be an important component of the treatment process, and the couple healing together. While the couple may have promised "in sickness and in health," many are ill prepared for what this really means in the face of chronic illness. Couples work can allow the couple to say things they would otherwise struggle to say to each other. A therapist can safely guide them to express their true feelings, fears and frustrations.
Along with the acceptance of a diagnosis and all it entails, comes a grieving process. This might sound odd, as no one has died, but there has been a death of sorts. In many ways there has been the death of the life that they thought they were going to have. The life they signed on for when they said "I do." A chronic illness can change many of the goals and dreams the couple had. Perhaps children are not part of the picture anymore. It is possible that physical hobbies they once shared, are not something they are able to do together anymore. No matter how big or small, there is a grieving process, and it is an important step to take place. This is another way that a therapist can be a tremendous benefit. The individual can say these things out loud, acknowledge the resentments they may have, work through their process of grief, and come to an acceptance of the "new normal" of their life.
Among the many other reasons the caregiver could greatly benefit from speaking with someone, are several factors that have been touched on earlier in this piece. They may have growing anxiety levels, as they worry about their partner's health, and fear what might happen if they have a flare up. They could be dealing with a great deal of depression about the state of their partner's health, or a feeling of helplessness when it comes to them better getting better. They may be dealing with the reality that their partner might not get better, and that their condition is progressive. They often struggle with sleep issues, as they are often fixated in how well their partner is or is not sleeping. I can remember a 3 day period when my spouse barely slept, as I was wheezing in my sleep, and he feared I was about to have an episode.
Many caregivers neglect their own physical and emotional health while caring for their loved one. They are not sleeping well, are not eating well, are not exercising as they once did, and are not attending to their own emotional needs. They do not understand the importance of tending to their own well-being. If they are not taking care of themselves, if they are worn down physically and emotionally, they will have nothing left for anyone else. This can be at their work, in their friendships, with their family, and with their partner. A therapist can help them to understand that as much as it might feel counterintuitive, they must attend to their own health needs first, before they turn their attention towards the care of others. Many people have a sense of guilt about this idea, but a therapist can help them work through that feeling of guilt, and understand why their own self care is a priority.
The caregiver must be willing to ask for help. Whether it is for someone to come over so that they can have a much needed night out with their friends, making time for a weekly yoga class, or allowing themselves to leave the house to take a peaceful and restorative walk. They should also make sure they are attending to their nutritional and physical needs. The caregiver must make sure that their own rest is a priority. If it gives them the peace of mind to sleep, get the patient an emergency alert device that they can push if there is an emergency. This way the caregiver can rest easy, and help is a push away. If the caregiver is willing to reach out to tend to their own emotional needs, and to provide a space where they can speak with an unbiased therapist they will grow to believe that caring for their own health is not just ideal, it is essential.