Accepting Help When you Need It
I'm a very independent person and hate having to ask people to do things for me. But now I'm having to ask my husband to do so much--take me to doctor/procedure appointments, help me deal with problems with the feeding tube, do the weekly shopping (I don't have the stamina), lift and carry things I don't have the strength to lift and carry anymore, walk the dog since I'm not supposed to burn calories with exercise, the list goes on and on. Not to mention the fact that he's my primary emotional support. It's not that he has a problem with it--on the contrary, he continually reassures me that he's thankful he can do these things for me. (As you can tell, he's a wonderful man!) And I try to find things I can do for him, even if they're small things like making his coffee in the morning or doing the bills, and to constantly express my love and care for him. But it's hard not to feel frustratingly dependent and depressingly incapable, as well as guilty at the toll my illness is taking on him. And all of that feeds the anger I feel at being ill in the first place.
I know that as I gain back some weight and stamina, I'll be able to do more things for myself, and that I need to be as patient with my current limitations as my husband is. But that's certainly easier said than done.
Thank you for your letter. You have put into words exactly what thousands of chronically ill adults are feeling. Giving up independence and accepting help is never easy. Accepting help when you’ve always been in the caregiver role yourself can feel nearly impossible! When the person providing most of your care happens to be your spouse, the additional stress can place the couple’s marriage in jeopardy. Therefore, it is critical for your family, and all family caregivers, to find financial, medical, and emotional support as soon as possible.
People with chronic illness often experience grief: they grieve the loss of the life they used to have, should have. Negative emotions that are turned inwards are extremely energy-consuming, but provide no benefit. The article “How Not to Treat Yourself when Chronic Illness Strikes” was written by Toni Bernhard, a former law professor who was forced to resign due to the stresses of chronic illness. http://www.kevinmd.com/blog/2011/08/treat-chronic-illness-strikes.html
The National Institute of Health has put together a list of informational articles that are helpful for people coping with chronic illness. Some of the subjects addressed include researching a diagnosis, methods for coping with stress, researching specifics such as statistics, clinical trials, medical, surgical, and pharmaceutical management of specific illnesses.
http://www.nlm.nih.gov/medlineplus/copingwithchronicillness.html
Financial issues are a very common worry. “How will I pay for my medical care, and how will I support myself and my family?” The Invisible Disabilities Association has assembled a list of public and private agencies that provide financial support for people in need. http://www.invisibledisabilities.org/connect/onlineresources/programs4people/
By exploring energy conservation methods, you may find that your limited energy stores can be stretched a bit further. Here are a few resources that offer suggestions:
Free eBook: “Chronic Illness Tips: 263 Ways To Do More Than Just Get By” is by Invisible Illness Week founder, Lisa Copen and friends. Over 20 contributors share their best tips to live successfully with chronic illness on a variety of topic. “These experts are people who have the credentials,” says author Lisa Copen, “but more importantly, they have experienced illness themselves or health issues of someone close to them. Their tips come from the experience of living with the challenges illness gives us.” The chapters include coping tools, relationship issues, career, faith, and practical tips, from traveling with an illness to homeschooling. There are also many tips on how to encourage someone who lives with a chronic illness.
101 Hints: The Muscular Dystrophy Association offers a free E-book “101 Tips to Help-With-Ease for People with Neuromuscular Disease: A Do-It-Yourself Owner’s Guide.” The tips are organized into activity groups: dressing, communication, mobility, recreation, housekeeping, sleep/rest, grooming, toileting, eating, and exercising.
For more information, try one of these organizations that provide support to people with chronic illness:
The Invisible Disabilities Association http://www.invisibledisabilities.org/
Advocacy for Patients with Chronic Illness by Atty. Jennifer C. Jaff http://www.advocacyforpatients.org
Rest Ministries is the largest Christian organization that specifically serves the chronically ill. http://www.restministries.org
Lastly, I recommend “The Spoon Theory” Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. In the article, Christine presents the challenges of living with chronic illness in a tangible way, so that a friend can briefly step into the world of living with fatigue, chronic pain, and other challenges.
Back to Cut the Red Tape