Spreading Awareness for Pancreas Research
How To Help A Sufferer...
Understand What You Can’t See. People can't see pain, and a sufferer can often look "fine" on the outside even when they are in constant pain on the inside. Pain comes in different degrees; sometimes light and uncomfortable, and sometimes causing the sufferer to double over and clench their fists, panting and yelping in agony. Even when the pain is light, it can keep the sufferer in a grumpy mood without them realizing it. Try to be gentle and understanding.
Help Them Cope. Sometimes the sufferer learns many coping skills and is able to go about doing the tasks necessary to get through each day. Many tasks, though, can be difficult, and there may be many difficulties you do not see or notice. I had someone give me a "reacher" once when they heard that even bending down to pick something up was hard for me. That was so thoughtful. Is there something you can offer? Is there a "tool" that could help them cope with even the little things? Coping can also be a behavior... such as letting a mind wonder to a place of happiness or at least a place of peace. Is there a gesture you can offer that may bring a new coping strategy for someone who suffers? A book or words perhaps? Sometimes, a sufferer can find "fun" in something for at least a moment, and maybe even occasionally smile while they are suffering - thank goodness for those times. Because much of the time, especially in silence at home alone, the sufferer is battling a life of never feeling like others, never feeling completely "good", and doing many things to just cope and get through another day.
Hold Your Tongue. A sufferer tries everything to educate and treat (with their doctor's help) their condition in any way possible - they do not want to be this way. Suggestions from friends and family are okay, but usually the sufferer has already tried and thought of those things too. Trust me - a sufferer wants to feel better and is trying everything to "cure" it. It can be frustrating to hear a constant list of suggestions from friends and family. So, although it may be in good measure, try to refrain from offering such ideas. Also, remember they are not always doubled over in pain but that doesn't mean it is not there. Sometimes the pain is light and the sufferer certainly takes advantage of those days. It sure makes their life a more thankful one. But it can be a yo-yo. Try not to think or say, “You seemed fine a while ago.” A sufferer can be good at hiding the pain, especially for company.
Offer Tangible Help. Even though the sufferer and his/her family can be overwhelmed and feel like a burden to need help, you can offer it in tiny ways that seem less conspicuous. When you are going to the store, you can make a quick call to see if there is anything you can pick up on your way, or say, “I’m running in the grocery store and was wondering what kind of ice cream you like? Do you need any bread or milk?” You can also say, “I will be out and about and was wondering if I could get your kids from school?” or "I have a couple of hours and would like to come do some housework for you while you rest." Do not be pushy though - some are better than others at "letting go and letting others" (I am not too good at this myself).
Bring Dinners and Food. Setting up dinners or food for a sufferer and their family can be great. It can at first feel very humbling to receive, but a sufferer may truly need such help - especially if they have a family to feed. Just a thought… sometimes it is hard to continue to “receive” dinners or food at the door, leaving the sufferer or family members worried over having to greet everyone that comes… How about leaving a cooler at the door and asking everyone to simply leave the food in the cooler and the family can retrieve it when they are ready. That keeps everyone from feeling burdened and makes dropping off items less obtrusive. Don’t take it personally, it can just be overwhelming having to greet everyone each time, and sometimes the sufferer is home alone and in bed resting. They will ALWAYS be so very thankful for the food and the items left for them. Also, leave a note if you can, just mentioning anything specific about the food and signing your name (even address) in case they want to send you a card in return. Personally, I had the hardest time wanting to thank EVERYONE for all the food and thoughts, and sometimes I was frustrated not knowing who left the food. I like to know who to thank at least in my prayers, even if I couldn’t send out a note to each one, so try to leave your name. *Another important point is to only use disposable, non-returnable dishes. It can be very difficult for a sufferer or their family to try to return them all. (Note: You can use the next tip - a Caring Bridge site - to help coordinate a dinner calendar)
Create a CARING BRIDGE. Caring Bridge is a free site that provides an online personal page where medical progress can be updated and viewed by friends and family. Trying to update many family members and friends frequently is a hard chore for anyone trying to care for a loved one in times of great illness. This site makes the task much easier - and the messages of support others can send to the sufferer through this site can become a great source of warmth and encouragement. If that is not enough, the site now offers a calendar page to coordinate care for the loved one or friend, and can also help plan and organize meals or provide assistance to those in need.
Keep In Touch. Constantly let them know of your presence. Letters, cards, or notes were the best support for me. It is the least intrusive way to care, and the most powerful way to let the sufferer know they are not alone. It makes them feel thought of, cared for, and remembered. Just keep letting them know you are there. If you like, offer to sit with them for a little while, but don't be pushy. Some like company and others do not. It may also depend on the day, and of course you will need to be flexible. But no matter what, a simple written message or little card can always be a light in a dark day.
Show Compassion. Sufferers don't like to always be the sick one needing help, but at the same time, can only do what they can to get through. When they can do things for others and themselves, they feel energized; but when they can't, they are left feeling helpless and angry. The sufferer of chronic pain is often misunderstood, but for those not suffering, please try to understand.
Have Patience. Chronic pain does not forgive or wait. The sufferer is at its demand. It can cause them to not be able to plan ahead, or to have to cancel activities at the last minute. Then, the sufferer can again feel isolated, alone, or judged for “not trying”. There can be misunderstandings. Try to understand.
Share Your Life. At times a sufferer would really like to hear about other people's lives and happenings - in a way to feel more normal. Use notes, cards, or e-mail (as they are very unobtrusive) to share what is going on in your life, and of course let them know you are still thinking of them.
Don't Take It Personal. Remember, sometimes a sufferer may not have the energy to answer the phone or to chat with others, but you can always leave a message - they will have heard you, and know you care. E-mails can also be very helpful and nice because a sufferer can answer them on their own time when they are up to responding or "chatting". You can ask in a message through e-mail if there is any help they need. If the sufferer doesn't respond or says no, don't take it personally. They may be the type that needs to be alone, or find it hard to talk to others. They may be too overwhelmed to even think about what kind of help they need. Just let them know you care. You can occasionally ask again (as you may catch them on a day they could use some help) but don't push it. If you feel there is something important and helpful you have to offer, and it is not obtrusive (such as leaving something on their doorstep or sending a care package), do it anyway and it will likely it will be appreciated.
Reach Out to the Family. Try to remember that a sufferer's family suffers along with them. The illness affects the entire household, and can cause stress and anxiety for each member. There are times it is so difficult for them to help one another, as they each suffer in their own way. Reach out to the spouse of a sufferer and offer support to him or her as well. Ask what he/she needs, or send them a card too. Offer for someone to sit with the sufferer while you take the spouse out to dinner - giving them time away from being the "caretaker" for a bit. Just remember the entire family is trying to cope with this illness. The sufferer feels guilt for it all, and the family members feel helpless, unable to make it better.
Please always know that you are an important part to a sufferer’s life. You can make a difference, and already have just by reading this. You obviously care, and to you, the sufferer is ever-grateful. Even if it is not physically, we will all suffer in some way in our lifetime. Whether it is great or small, we can all learn more in how to give and receive the support and care we all need. Even if it is just through thoughts or prayer, you have something to give to someone in need. We may not be able to heal all physical wounds, but we can heal one another in spirit by our friendship, compassion, and gentleness. No sufferer needs to suffer alone. Be the light he or she may need today.