Should I Tell Someone About My Invisible Illness?
/By Barby Ingle, Columnist
It can be tricky deciding when to tell someone about your chronic pain or invisible illness. You can never take back information once it is shared.
If you choose to disclose that you have a chronic condition or disability, you should decide when and how to do it. Take the time to think about different situations and how you wish to handle them.
Many people feel it is not their place to ask about your physical conditions, but knowing about your pain and limitations could help them understand where you are coming from with your thoughts and actions.
I know a chronic pain patient who liked a neighbor and was interested in dating him. He often helped around her house with handyman projects, and she would see him out on his porch and go out and talk to him. Eventually, he asked her out and they had a great time.
Over the next few months, they had dates scheduled but she ended up canceling a lot of them. She was just in too much pain. He began to think she was not interested in him and started to pull away.
Friends encouraged her to tell him about her medical condition and what she was going through. She did, and he stuck around for a while, but in the end it did not work out. However, they remained friends and it helped her see that she could still have a social life.
If you’re in this or another social situation, you should think about the following when deciding whether to disclose your condition and how it affects you:
- Are you able to participate in activities using your coping skills and tools?
- Do you need accommodations?
- Are you able to perform the activity safely if you choose not to disclose?
- Do you think the other person will react in a way that’s appropriate for where you are?
If you are not sure about the latter, you may want to wait until you are in a private setting.
If the situation becomes an intimate relationship, it is very important to share even if it means losing that person. It is not fair to them or you to hold that information back.
If your disability is in remission or typically under control, is there a reason to disclose? It is possible that flare-ups may keep you from future activities, so it would be a good thing to disclose ahead of time. The education you give them may also help someone else they meet along the way.
Finally, how will you address misconceptions about your chronic condition when you disclose? Some people do not believe in treating pain with narcotic medications or had a bad experience with someone else in their life with chronic pain.
Not disclosing is wrong if you are in a situation that can cause others harm. For instance, when getting on a plane, you shouldn’t be sitting in the exit row. If assigned by mistake, notify the flight crew.
When choosing situations and activities where you do not want to disclose your disability, take time to carefully analyze the activities you are able to do and plan accordingly. Remember, you can always reveal more information later as needed.
8 Tips for Living with Chronic Pain
/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.
Communication is Key with Chronic Pain and Illness
/By Jennifer Martin, PsyD, Columnist
Have you ever felt like the people in your life have no idea what you are going through? Like they just don’t get it?
Your friends keep asking you to go out with them for a late night, even after you have told them a thousand times you can’t do things like that anymore.
Your husband doesn’t understand why some nights you just don’t want to be touched.
Your parents don’t get why you can’t do 10 things per day like you used to.
The truth is, unless it happens to them, your loved ones will never fully understand what you are going through. And you can’t expect them to. There are some things you can do however to try and ease some of your frustrations. In my opinion, communication is key. And if you are thinking right now, “All I do is communicate and they still don’t get it,” then maybe it is time to try a new tactic.
It is essential to find a way to communicate with your loved ones about your wants and needs. This is so essential because everyone’s wants and needs are different and we as humans are not mind readers.
Your loved one may think he is helping you when he does the laundry so you don’t have to, but for you that may not be something you want help with. It may be the one activity you can do without pain and it may help with your sense of purpose.
Or you may want your very active family to slow down a little because you can’t keep up anymore without pain and exhaustion. But you haven’t told them yet because you don’t want to change their way of life on account of you.
How are the people in your life supposed to know these things unless you tell them?
Or maybe you have tried to communicate these things and they just don’t get it. What do you do then?
The first step is to find the right time to communicate. Over drinks in a loud bar or right before bed when everyone is tired may not be the best time. Find a time to have a sit-down conversation in a quiet room with your loved ones, whether it is one person at a time or all together. Think about what you want to say beforehand and write down some notes, so you make sure to talk about everything you want to.
Next, if needed, educate them a little on your condition and how it affects you. You may be surprised by how little people know about chronic illnesses, even those closest to you. They may understand the basics about your condition, but not enough to help you in the way you need them to. They may not understand how dramatically life has changed for you or how much you struggle.
Finally, talk to them about how they can support you. Tell them what you want from them and what you need from them. Mention some of the things they are doing that are very helpful and that you would like them to continue and then help them understand what you need them to do differently.
For example: “It is really nice of you to help me with the laundry but that is something I would like to do on my own. It gives me a sense of purpose and makes me feel like I am accomplishing something. Instead, I would really like for you to help more with the dishes. That is more difficult for me to do and it really hurts.”
It may take more than one conversation for your friends and loved ones to really begin making the changes you would like. But if you keep gently reminding them what you want and need, it is likely that you will see some changes.
Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness.
Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.
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.
