I am an administrator and member of several support groups relating to chronic illness and pain. I read hundreds of people’s stories every month.
Generally, it seems the biggest problem people have is coping with their conditions long term and helping their friends and family cope too. Most people believe their family and friends don’t understand or don’t believe that they are actually sick.
Some have no idea what their loved ones think because they are too afraid or stressed to talk about it!
So how do we fix this problem? It’s easier said than done, but hopefully I can help steer you in the right direction.
I’ve learned most of these tips the hard way: I’ve lived through them.
In the early stages of your diagnosis, your friends and family were probably supportive of your treatment. They went to every doctor’s appointment, paced hospital floors, and comforted you as the side effects of treatment began to appear. This is a good thing. It’s what you expect from people you love.
But after months or maybe even years of devoting their time and energy as a spouse, caregiver, or friend to you, they may start to feel some resentment at how much your disease has affected their life.
Rest assured these feelings are normal. How you cope with these feelings is important for maintaining and strengthening your relationships.
Problem 1: Feelings of Resentment
Why does my spouse/friend resent me? I am the one that is sick!
The simple answer is that they are human. It is a totally normal reaction to feel resentful when disease has invaded your relationship. In most cases, the anger is not meant for you. It’s targeted at the disease itself. You have given the disease an identity — a face and a name that they can point a finger at. And that scares them.
Problem 2: Sacrifices Become Forced
Before you were sick, things were different. For one, you most likely worked at a job. And maybe sometimes you even worked extra hours to save up for that vacation you really wanted to go on.
But now you are unable to work and if you are saving up for anything, it’s co-pays or medicine. You have no choice anymore and neither does your spouse. Now they must work extra hours to help pay for your treatment and cover the slack because you are not working.
When your spouse’s sacrifices for you are forced and not chosen, the stress of not having control over their own life can build up.
Problem 3: They Have More Roles Than They Can Handle
When you are ill, your spouse/friend is forced to take on roles in the relationship and family that perhaps you held previously. You may now find they are in charge of all housework, in addition to working a full-time job.
When all of these tasks have been placed on their shoulders, it’s easy for them to stretch themselves too thin — and eventually break.
Problem 4: The Stress of Being a Caregiver
Caring for you every day can be stressful. They may doubt their abilities, have trouble organizing their time, and feel like their life isn’t theirs anymore. Caregiving is a selfless role that very few can do without feeling some stress and frustration.
How to Cope with These Problems
Remember that resentment you are feeling from your spouse/friend is most likely related to the mental, physical, and emotional exhaustion they are experiencing.
No one wants to feel this way about someone they love, but when they are overworked and overwhelmed, resentment can be a natural response.
Try taking these steps before your spouse/friend begins to feel frustrated or when they start feeling that your disease is too much to handle:
1.) Keep your eyes on the prize! Disease may have become a part of who you are, but it certainly doesn’t define you!
Ask your partner to focus on the qualities they love so much about you. For example, your contagious laugh, your beautiful smile, your compassion for others, etc. Those qualities are still there and you are still you!
Look through old photo albums or home movies together and share memories of what it used to be like. Make plans for the future. Those plans will become special moments that can help your spouse and friends remember you when you weren’t disease-stricken. It will also revive your spirits.
2.) Communicate your feelings. Whether you are the sick one or the friend. Expressing your feelings, both positive and negative, is an important emotional outlet. Doing this regularly will help relieve stress and frustration.
You may feel uncomfortable discussing stress with your spouse or significant other, but there are so many other people you can turn to. Support groups, both traditional and online, are great ways to express your feelings in a setting where others truly understand your situation and can relate to you.
Members of the clergy, counselors, and trusted friends are also excellent people to vent your frustrations to. Keeping a journal may also help. Anything to get those feeling out of you.
3.) Get help before you need it. Since your spouse is probably assuming more responsibilities in your relationship, such as cooking, cleaning, childcare, accounting, and other tasks, it is important to have help lined up before these duties become overwhelming to them.
Ask friends and family how they can help make a difference in your partner’s stress level. Perhaps a few friends can get together to prepare meals, or a neighbor can mow your lawn when they do their own. It’s when these little tasks build up that stress levels can begin to spike.
4.) Take breaks. Relief from care giving is vital for your partner/friend’s emotional and physical health. Taking breaks to do things they enjoy is essential.
Make sure they don’t feel guilty about taking these breaks. Some people think that since you cannot take a break from your disease, then they shouldn’t be able to either. They have to maintain their physical and mental strength to care for you, and taking breaks is one of the best ways to replenish their drained emotions and energy.
Being chronically ill myself, I’ve had to form new and improved relationships with my friends and family. I am not the same old Colleen anymore and I have tried to make my loved ones understand.
I think if everyone is just open and honest with their partner or family, things will be better for everyone. Unless you have a chronic condition, it’s hard to understand exactly what it feels like to be chronically ill.
I think back to before I was sick and wonder, “Would I have understood?”
Colleen Sullivan lives in Florida. As a teen, Colleen was diagnosed with muscular dystrophy, rheumatoid arthritis, scleroderma, mixed connective tissue disease and other auto immune disorders.
Colleen has a Facebook support group for people with chronic health conditions called Someone Like Me. It’s a safe and fun place to make friends, ask questions, and share stories with people who understand.
Colleen’s father has another Facebook group called Patients United for DEA Reform.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.