Hello, today’s Outside Looking In is by Lisa Curbow, whose husband suffers from a chronic illness!
Lisa is a full time Registered Dental Hygienist. She and her husband, Eric, have 3 children. In her spare time she is a lifestyle blogger about life with a loved on who has a chronic illness, a Boy Scout volunteer for her sons Troop and part time student pursuing her Masters degree.
What is your relationship with the individual who suffers with a chronic illness/es?
My husband is the one who has a chronic illness.
Did you know them before or after they were diagnosed?
We had been married about 14 years when his illness started.
In your opinion, what changed in your relationship after the diagnosis / as the condition progressed?
I have become his advocate for all his medical needs. I am his caregiver. It’s different than many caregivers though. Not as involved. I get all his medications, make his appointments for doctors, contact the doctors, check on the medications he is taking currently, keep up with his medical history and everything he has tried. I make many decisions with him in mind as to if we go somewhere, if people come over, what the kids can do and what he needs to attend and what is not as important that he can stay home for. He is capable of his day to day needs, so I don’t need to physically take care of those. Sometimes I realize I am trying to “parent” him and at that point I must take a step back. He is not a child. It just something that I think happens when your loved one is somewhat dependent on you.
Have you been able to support them with their condition?
Yes, in the sense that I mentioned in the last question. Medical advocate. I research new things to try to help him and bring these up with the doctors. I try to reassure him that he is not his health issue and there is no need to feel guilty about having his illness. He often tells me he is sorry for being ill.
Do you find anything about their condition frustrating when you are together?
It is frustrating that we can’t make plans very far in advance as we don’t know how he will feel when the time comes around. That he misses out on a lot of the kid’s activities. Also that he feels guilty for his illness and that he misses so much. It equally frustrates us both, but we have come to accept that this is life for us at this time. One day maybe it will change, we always hope for healing.
What do you find difficult to understand about their condition?
It is difficult to understand how much pain he is in. I know he is in pain and he can tell me a number on the 1 to 10 scale. That is relative to each person though. My 8 and his 8 may be completely different. He also tries to describe exactly what his pain feels like but I can only imagine what he is describing, not fully understanding what it really feels like.
Have you ever had a question you did not feel able to ask them about their condition? If so, what was it?
In our case, no. Since he is my husband I have felt that I can ask him anything and he will honestly answer me. There is not really anything off limits or that I’m afraid to ask him about.
Had you heard about their conditions before meeting them / them being diagnosed?
Yes and no. I had heard of it but not like he has it. He was the first one I knew to have his condition chronically.
What has their condition taught you about life with a chronic illness?
It has taught me to enjoy every moment. Look for the positive in all circumstances. You have to, otherwise you can so easily be dragged down by the illness and all the negativity that goes with it. We both now appreciate health. You don’t realize that health is precious and how fast it can change. We also both have learned to appreciate family and true friends even more than before. People take these relationships for granted in everyday life. We no longer do. We have learned that some friends are there for you no matter what while others fall away due to the illness and the toll it can take on a family. Also, that family is so very important. They are often your biggest supporters.
What main piece of advice would you give to someone in your position?
Assure your loved one that you are there for them, no matter what. Make sure that you mean it and then follow through. Love them and support them the best that you can. They need you and they need to know that you love and support them no matter what.
Thank you so much Lisa for getting involved! If you want to read more about Lisa and her husband, make sure you check out her blog!
- Remember to take a look over on Jodie’s blog for Tuesday’s Confessions of a Spoonie.
- The NEXT Confessions of a Spoonie will be posted by me, on Sunday!