I've decided to break this post into two parts; coping with the emotional/social effects of chronic illness and then coping with pain. Hopefully this will shorten the length of the post.
Endometriosis has all encompassing effects on the lives of the individuals diagnosed with this disease. Socially, endo can limit the number of activities that we do with our friends and family, as we may not feel well enough to be constantly on the go. This can be especially tough during the teen and young adult years when friendships tend to rely heavily on going places and doing things together. Our social relationships are also effected by the lack of understanding that we may receive from others, especially when we have to bail out of doing something at the last moment on account of our health. I can't count the number of times I've seen people roll their eyes when I say "Sorry, I'm just not up to it today".
Financially there is the cost, for those in the US especially, of the multiple doctors visits and tests, the surgeries, and the medications. Some women with endo find that they cannot maintain regular jobs and thus their financial situation becomes even more strained. Financial problems can contribute towards relationship problems with our significant others, as we all struggle to make ends meet. We may also come to believe that we are a burden to others when we must rely on their assistance to get our needs met.
Our relationships with our partners also can suffer due to the endo. Many women with endo often have pain during and after sexual intimacy which can limit the sexual relations we have with our significant other. For some couples that are used to expressing their feelings through sexual intimacy, this can put a real strain on the relationship. As research has shown that men tend to show their feelings through physical means, we may feel as though we're not valued within the relationship when we cannot engage in sexual activity. Our sexual identity and self-esteem can be siginificantly affected by this and we may worry that our partners will turn elsewhere to meet these needs.
So what can we do to cope with all of these feelings?
Here's a few ideas. While they are numbered, they are not in any specific order.
1. Learn what you can about endo. You will no doubt be forced to explain over and over again exactly what is going on with your body. If your doctor has taken pictures during the surgery, and you can stomach their appearance, have a peek at the pictures as this may help you to explain to others what is going on. There is a very good copyrighted "Letter from Survivors" for you to read, which can be found at the website hcgresources.com. Some of my favorite books on the topic of endometriosis are: "The Sourcebook" by Mary Lou Ballweg; "Endometriosis: A Complete Reference for Taking Charge of Your Health" by Mary Lou Ballweg; "Endometriosis: A Key to Healing through Nutrition" by Dian Mills; and "Endometriosis for Dummies" by Dr. Jospeh Krotec.
I have found it somewhat of a comfort to learn and understand what is going on with my body, why it's in pain the way it is. It doesn't take the pain away, but it does help to know why it's happening again and again. When someone asks me "What is endo?", I usually respond with a pretty much prepared speech: "It's a disease that affects millions of women where the cells of the uterus grow in places other than where they should be growing and can cause immense pain and other symptoms". I then leave it up to them to ask further questions if they are interested, which is an easy way to not go overboard with the explanation. For my son (5.5 years old) I've told him that "mommy's cells got mixed up maps when they were being made and it causes mommy to be sick".
2. Focus on what you can do rather than on your limitations. You may not be able to get out to walk through the mall and meet with your friends in person, but you may still be able to come up with an alternative as to what you can do. You might not be able to sweep and mop the floors, but perhaps you may be able to sweep and mop one particular room.
3. Break up large tasks into smaller ones. This way you feel as though you are still accomplishing something despite that you might not get the whole thing done in one shot.
4. Get support. Search the internet or ask your doctor/local hospital if they are aware of any support groups operating in your area. Internet support groups, such as Goddesses of Endometriosis are also a good option, as they are available to you 24 hours a day/7 days a week. Try to limit the amount of time and energy you invest in people who don't support you, however you can do so. You need all the energy you can get to live with this illness and the people who don't support you only zap your energy.
5. Help others. You may not feel that you have much knowledge to offer others, however other people often find it a comfort to know that they are not alone, that other people also walk their path each day. Just to hear this can be re-affirming for some people. Your experience is valid, and deserves to be heard!
6. Get active in raising awareness. It's with increased awareness of the effects of this disease that we can begin to shred some of society's misconceptions about us being chronically ill.
This is be no means a comprehensive list of all you can do to help yourself cope with the non-physical side of endo, only a means towards starting you off on your coping journey. I'd love to hear back in what others do to cope with this disease!
The next post on Coping with Pain will be available shortly... stay tuned.