Do You Feel Like a Burden?

I have counseled hundreds of patients with chronic pain and chronic illness. Most of them have said “I feel like a burden to my friends and family”. I too have felt that way at times. It’s a common feeling for those of us with chronic pain or a chronic illness. Chronic conditions affect not only the patient but those close to the patient as well. Even though we didn’t do anything to cause our condition, we feel like it’s our fault and that we are making the lives of those around us more miserable. So what can you do to feel like less of a burden to your friends and family? I hope the following suggestions will help.

Contribute what you can, when you can. You may not be able to do as much as you used to, but that doesn’t mean there isn’t anything you can do. You also may not be able to do things as quickly as you used to. But that’s okay too. Take inventory of the chores and activities you can do and help out in those ways. So you may not be able to wash the heavy pots anymore. But can you wash the small dishes or load some of the dishes in the dishwasher? You may not be able to mop the floors anymore, but can you wipe down some of the counters? You may not be able to fold the laundry, but can you load the washer? Anything that you can still do will be appreciated.

Keep the lines of communication open. We can’t expect the people in our life to read our minds. They may not know if you are in pain or are not feeling well. It’s important to communicate about the way you feel, not only physically but emotionally, so your loved ones and the other people in your life know how they can help you or if you even want the help or if you just to be left alone. Also, in addition to educating yourself about your illness or chronic pain, educate those in your life as well so they know what to expect and there are few surprises.

Make your spouse, significant other, friends, etc. the center of attention at times. Do something nice for the close people in your life once in a while to show them how much you appreciate them. It can be as simple as telling them how much you appreciate them or telling them to go out for the afternoon and enjoy themselves. Talk to them about what they are going through to see if there is anything you can do for them. It’s important for us, the patients, to remember that we aren’t the only ones affected by our illness and that our caregivers need attention too.

Maintain a positive attitude. This is particularly hard on the days you are experiencing a lot of pain or just feel horrible. And I’m not advocating that you hide your emotions or act like someone you are not, especially on days that are particularly hard. But maintaining a positive attitude as much as possible is not only good for your well-being but for the well-being of others around you. It can help you better cope with your pain or illness and it can help you avoid taking out your frustrations on the people around you who are only trying to help and care for you.

Focus on something other than your illness/pain. No one wants to hear about how terrible someone feels all the time and no one wants to talk about how terrible they feel all the time. I know I sound like I’m contradicting myself because I told you above to communicate with the people in your life about your illness/pain and how you feel, but there is a time and place for that and you don’t want it to consume you or them. When you are around your loved ones, try focusing the attention on something other than your illness or pain if you can. If you are asked by someone how you are doing and you don’t want to get into it you can simply say “I’m fine thanks”, and then redirect the conversation to something else. Even if you aren’t feeling well on that particular day, it is important for you to have things in your life to focus on other than your pain or illness. This will help distract you from your pain or illness, at least for the time being, and will bring a sense of normalcy to your life.

Is there anything else you have done which has helped you feel like less of a burden?

Tips for Caregivers

Being a caregiver to someone who has a chronic illness can be a difficult role. You want more than anything for your loved one to be healthy again but there is nothing you can do to make that happen. You may feel helpless and frustrated and unsure of what you can do to help your loved one. Here are a few “do’s” and “do not’s”:

1. DO listen – Sometimes your loved one just needs you to listen without offering advice or telling them what you think they should or should not be doing. Having a chronic illness can be frustrating and sometimes they will need to just vent. If there is something they are or are not doing that is concerning you, think about talking to their doctor about it to see what they think. If the doctor agrees with you, have the doctor talk to your loved one about it. As unfair as it may seem medical advice will mean more coming from their doctor than coming from you. They need you to act as their support system, not as their doctor.
2. DO NOT neglect your needs – Acting as a caregiver to someone who is chronically ill can be all consuming at times. Even if your loved one is feeling better at the moment, you may still be thinking about their illness. I can’t express how important it is for caregivers to take care of themselves. You cannot be helpful to your loved one if you are stressed out, tired, overwhelmed, or upset. Believe me, your loved one would rather you take a break in order to do what you need to do for yourself, whether it be going to the gym or spending an evening with friends, if it is going to help you to take better care of them.
3. DO ask what they need – Sometimes it’s hard to tell what other people need unless you ask. One day they may need something completely different than the next. It is best to talk with your loved one about what their needs are so you are not in the dark.
4. DO educate yourself about their illness – It is really important for you, as well as your loved one, to be educated about their illness. That way, if they are not feeling up to it you can be their advocate. Read books or articles about their illness, talk to others who suffer from the same illness or ask their doctor questions.
5. DO NOT constantly ask how they are doing – Every day is a reminder to your loved one that they are sick. People who have a chronic illness usually do whatever they can to make themselves feel more “normal”, whether it be doing as much as they can when they feel well or just trying not to think about it when they don’t feel so well. By constantly asking how they are doing, you are just giving them another reminder that they are sick. I know this can be difficult for a caregiver because all you want is to hear your loved one say they feel okay. One thing you can do is have a conversation with your loved one about how many times per day, per week, per month it is okay for you to ask them how they are doing. Everyone’s different. Some may not mind it so much. For me, I absolutely hated it when people were constantly asking me how I was doing.

Is there anything else you can think of that should be on the "do" and "do not" list?