By Ellen Lenox Smith, Columnist
Getting a diagnosis of chronic pain or any condition that will be with you for the rest of your life is heartbreaking and overwhelming. But when the dust has settled, you have mourned your old way of life and begun to accept the new life you will have to adjust to, there are things you need to think about to make the rest of your journey more productive and peaceful.
1. End anger and redirect
It is so easy to get stuck feeling, “Why me?” or “What did I do to deserve this?” It takes courage and strength to turn this around, put a smile on your face, and instead learn how to cope with what you have been given.
Awhile back, a doctor’s letter was posted online on what it is like to deal with a patient who has a chronic problem that will never get better. It was an amazing insight into what goes through a doctor’s mind. They go into medicine to help others and people like us come to them that don’t fit into that box.
Remember, they are human and it will bother them not to be able to fix you. Their compassion is what we need. When a doctor shows through his words and actions they’re trying to find solutions for me, I come home grateful that they care. We can't expect the medical field to fix the impossible - but we also have to live with hope and not give up.
2. Prepare for appointments
When you go to a doctor’s appointment, we all know there is usually very limited time and if you are not careful, you’ll forget to ask things that are important. Trying to call the office after and asking for an answer to those questions later can be an annoyance for them and is preventable.
Try to go to the appointment prepared. Living with a complicated condition, you owe it to yourself to be prepared so you stay on point with what needs to be accomplished. To help get ready:
- Keep a list at home before the appointment and jot down things that pop into your mind that you want to address and then take that list with you.
- If you have a lot to cover, consider making a second appointment to cover the rest.
- Arrive with your medical cards and co-pays.
- Have a list of your current medications, dosages and supplements.
- Have a list of any medications you have reacted to.
- Have contact information of other doctors treating you.
- Have a list of past surgeries and important tests and the date and location of where they took place.
I keep my medical records on file so I can refresh it with information such as new medications, tests, surgeries, etc. and make sure I keep a copy in the car in case of emergencies.
3. Be willing to think out of the box for solutions
As you accept a long term health issue, another thing you want to consider is keeping an open mind. New ideas, tests, treatments are always happening. Try to think out of the box and if something can’t hurt you but just may help you, consider giving it a try!
4. Learn to put things to rest that are out of your control
You are already fighting with your emotions coping with a chronic condition. At some point, it is helpful to learn to let things go that are just out of your control. You didn’t ask for this condition, so why remain angry?
Your life will never be the same, so try to find peace and redirect towards more reasonable and productive activities. Maybe you had to step away from your career, but there could be something new you can take on to supplement your income. Or maybe you can find a good opportunity to advocate to help others coping with a similar condition.
5. Patience and more education
We have to learn to accept, although it is frustrating, that not all doctors can possibly know how to address all of our difficult conditions. Take this issue and help to make the changes needed. Consider speaking out by educating those that are trying to help you and those that have no knowledge. Possible suggestions:
- Take copies of helpful information to hand to them and ask them to read
- Ask to speak to staff, young medical students, nursing students, or physical therapy students
- Set up awareness tables at local events
- Write letters to the editor at local and national newspapers
- Call your congressman for suggestions
- Set up a pain awareness event to help educate others and bring in a guest speaker or panel forum
Be proactive and help with the much needed education, so the next person in line with what you are facing has an easier road to follow!
6. Start a support group to help others – not to just sit and complain
Along with educating the medical field, you also need to think about a support system that can help others like you in the community. We have set up a site where we list willing doctors that will take our difficult cases, brought speakers into our support group, and shared with each other to try to soften the journey we are on.
Try to prevent the group from using it as a format to complain and whine, but instead use it to educate and help direct each other.
7. Prepare for a hospital emergency
This topic was approached by Barby Ingle in a recent column, Power of Pain: Making a Hospital Stay Easier. I encourage you to read it. There were many helpful tips suggested to prepare for the possibility of an emergency visit and also for a planned surgery.
We are responsible to know about us and share our information, so think to prepare this while you are alert and able to be as complete as possible. And share with someone where you keep this list. I always keep a copy in the car to be safe!
8. Be grateful to those that reach out and try to help
A person living with chronic pain becomes a host of many issues and that can be overwhelming for others too. So when someone reaches out and cares about you and tries to help in any capacity, remember to count your blessings.
We have all experienced some close friends, family and even medical personnel that have chosen to step away instead of embracing us. It is painful to experience. So when you meet anyone who is kind to you, remember to focus on that and try to let go of the hurt from the others.
We don’t need to add any more stress to our lives, feeling let down and disappointed by those others. And believe me, it is easy to write this and harder to follow. Look and treasure those that come into your life due to your circumstances and try to not look back!
Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.
For more information about medical marijuana, visit their website.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.