THE “D” WORD
Last year a friend of mine had surgery. I marked it on my calendar so I wouldn’t forget to call and be cheerful before she had the surgery and I was designated to drive her home when she was done. During a particularly crazy week at work, phones ringing, everything going wrong at once, I got a call.
“Hi, I had my surgery and I’m ready to be picked up.” (You know, it is great to write reminders on your calendar, but then you have to remember to look at the calendar to be reminded.)
I dumped my work that is never done into the “to do later or whenever” box and drove to the hospital as fast as I legally could. Well, maybe a little faster. I drove my friend home, and went in to take care of her. She made me a cup of tea and I was so exhausted that she suggested I take a nap. When I woke up, we watched a video together, then I went home.
Believe it or not, she is still my friend. And she considers me supportive. Thank goodness for modern medicine and quick recoveries. Hers, not mine. I’m just warning you about who’s writing this article on support.
So, how to get support.
1. Define the problem. Sometimes, when you are stressed, you don’t know what to do. Often, telling people what the problem is gets you the help needed.
When my daughter went in the hospital emergency room on a Friday evening, I had to call the insurance to report it on Monday. I called and gave information, but the woman on the phone had more questions. She asked the name of the emergency room surgeon.
Now, I’m sure I was told, but my brain was having a total melt down. I just started describing the problem. “I’m in the hall, at a pay phone, across from my daughter’s room at the hospital. We’ve just gotten out of intensive care. I don’t remember the surgeon’s name but, if you will wait, I’ll go ask the nurse down the hall.” To my great relief, the woman assured me that she would call the hospital for any further information needed.
2. What kind of support do you need? Do you need financial, physical, or emotional support? It helps to be clear on what your needs are. If you need someone to help you through the paper work for disability insurance that is very different then having someone hold your hand while you get a blood test. The person able to help you with the one may not have a clue about the other.
3. Get information. Sometimes getting information can help you understand and assure you. At other times, you can just o.d. on information. So, when you are in the “need info” mode, read everything you can, go to seminars, search the web, or ask the right people. But when you can’t take in another scrap of data, or it is all getting just too scary, give yourself a break. Go to the movies. The books and info will be there when you are ready. Take it at your own pace.
4. Use resources available. When we were in the hospital, the Social Worker came by to let me know about a program that helped pay some of the bills for chronically ill children. Having IBD qualified my daughter. You can get information on State programs from hospital staff or your County Social Worker or Health Nurse.
5. Let people know what you need. My friend needed a ride home after her surgery, she let me know, then called and told me to come get her. That worked.
I should also add: Let people know what you are on! If you are on a steroid drug, a little warning to friends and family is a good idea. Then after you have been totally unreasonable, can’t sleep, forgotten things, and have just eaten enough dinner for 10 people, you may get a little understanding.
6. See if there is a support group in your area. What can you expect from a support group? One, it is a great place to get information. For instance, recently a woman came to our support group and wanted information about a drug her doctor wanted her to take. She was worried about long term use. There were several people there who were on the drug and had been for many years and could give her first hand information on how it was working for them.
At a teens support group, my daughter had met a youngster that had had the surgery that the doctor was suggesting for her. She had a lot less fears and was more prepared. It made the whole experience less traumatic.
Also, you can bring up subjects that would make some of your acquaintances faint. The people in the support group have experienced such problems as “Where’s the bathroom. Now!” And they can share tips on that and other difficulties. The support group is a great place to laugh about serious problems. It gives you a better perspective on it all.
And, yes, there will probably be someone there who has found meditation, the perfect food or medicine, the most miraculous healer or natural herb, and is touting the answer to all of your ills. With IBD, there is no one-size-fits-all solution. What works for one person, doesn’t always work for another. That’s what I have learned from support groups.
After you have been to the support group a few times you find that you start to care about the people there. And they start to care about you. They are truly interested in how you have been doing and what is working or not working for you. You may just see these people once a month or so but you will find it is support just to know they are dealing with IBD too.
7. Be nice to your support people. Every one you count on, doctors, nurses, insurance people can benefit from a friendly word. And friends and family should not be taken for granted. The morning after a particularly trying encounter with my daughter where tempers were hot on both sides, I came down to work still feeling bruised. There, on my computer screen was a little yellow sticky note that said: “Sorry, Mom, I love you.” OK, I’m easy, but it made my day. All was forgiven and forgotten. It put me right back in her corner whenever she needs me with whatever I can do.
So there are my tips on getting support. And if you are the support person, be sure that you get support too. I send you my best wishes and I hope this article has been supportive.
Copyright 1996 - 2002 Arlyn Serber