Topics covered in this section:
Friends and Family
The Trigeminal Neuralgia Association
Local Support Groups
Resources for Friends and Family
The kind of help you need will vary, according to your health and level of pain during any one season of illness. What follows is a list of the various kind of help you might need. Use this as a starting point to create your own list:
Physical Helps
- Grocery shopping
- Meal preparation
- House cleaning
- Car maintenance
- Dog-walking
- Getting recycle containers down to curbside
- Running miscellaneous errands
- Watering Plants
- Helping with the yard
- Drive you to an appointment
- Picking up a child after school or practice
- Go with daughter or son to school event
Mental Helps
- Help plan the week
- Help Organize tasks
- Calling job to work out details
- Look through mail and clear clutter
- Help with taxes
- Write thank you notes
- Help you plan a birthday party
- Arrange for small dinner party for you and spouse/family
- Organize medical information
- Search internet for information on illness
- Attend doctor appointments
- Help process medical treatments
- Help with insurance forms
- Set up email communications to friends and family
Visit Family Caregiver Alliance for support-givers.
Spiritual Helps
- Pray with you
- Lend you encouraging and spiritual DVDs, CDs or books
- Take you out for coffee, to church, or to see friends or family
- Send you encouraging and spiritual cards
- Take you on an outing to a place you enjoy
- Remind you regularly that they care
The Trigeminal Neuralgia Association
Gone are the days when there was little or no access to help. You are never alone. TNA exists to help you. Access their website 24 hours a day, or call the patient representative during working hours at 1-800.929.3608.
TNA will provide you with the latest information and research on facial pain, and will help you connect with national and local support and physician referrals.
Being with people who have some understanding of what you and your family are living with is a tremendously positive step in your good health. If you contact TNA, you may find a TNA-sponsored support group already exists in your area; or you may want to start one yourself. Also, your church or community may have a support group for people with chronic illnesses.When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.--Pauline R. Kezer, chronic illness counselor
Resources for Friends and Family
Here is what people with facial pain want you to know:
Please, dont try to fix this for us. We dont need you to. We just need you to care about us and let us know that we are loved by you.Please dont feel discouraged if we dont become completely well. We are confused and scared much of the time, however, we desire to live as well as we can, despite how sick or how much pain we must bear. Please dont give up on us, or we might too.
Please stay in touch with us! Send us a note, an e-mail, or call us. We may not get out so much, however, we sure need to be in communication with you.
Please acknowledge that we are ill, but dont press us for a full report. Rather than asking the standard, How are you? question, please say, Its good to see you here. If you really want to engage with us, ask us, What is this like for you?
Please avoid platitudes such as, God never gives you more than you can stand. This doesnt help us to accept our illness any better, and its likely to hurt our faith.
Please dont overlook our family members. Sometimes we get all the attention and they get very little and the pressures on them are, at times, much greater than the pressures on us.
Please help us in practical ways. Rather than say, Please let me know what I can do to help you, offer specific support based upon your own gifts and time allowances.
Please invite us to events and things even though we are ill. We have limited energy, but most of us still can get out and do things - we just have to plan carefully. It will really bless us if youll tell us that youll understand if we need to cancel at the last minute, and if you ask us what kind of things might need to be done in order to make us most comfortable at the event.
Please tell us about your life, and dont feel you can never complain about anything - because compared to us you have nothing to complain about. All of us have our stuff and we want to support you through yours. We dont believe we have the monopoly on difficult circumstances -- we care about what you are going through too!
50 Ways to Encourage Someone with Facial Pain:
- Even if its hard to understand how she can hurt so badly, yet look so normal, please believe her when she says she is hurting. She really is.
- Volunteer to do some research on the internet for him about the illness.
- Put meals in disposable containers and include a note telling her she doesnt need to return the containers.
- Invite her to do spontaneous things, like go to the park, or have a picnic. She may be more able to participate since she knows its a good day or a bad day.
- Validate his illness by asking him if hed be willing to encourage someone else who is struggling with pain.
- Take your friends dog out for a walk.
- Never minimize his illness by saying things such as, Im sure its all going to turn out just fine. It makes him feel that he cant be real with you about his fears, and he needs to be able to express them.
- Ask her if shed like you to go to an appointment with her, just for the company.
- Remember anniversaries, such as the when he was diagnosed or when he had major surgery. Just a phone call saying your remembered him is enough.
- Ask him, What do you wish other people knew about TN?
- Tell her, I made some soup and have extra - when can I bring some over?
- Treat your friend to a gift of movie rentals (such as Netflix) via mail. ($7 to $15 a month).
- Stormy days often cause pain; drop off some bubble bath.
- Buy him a microwaveable heat pack.
- Ask him if hed be interested in writing something for your community or church newsletter about what its like to live with a pain-related illness.
- Ask, Im going to Costco tomorrow - what can I pick up for you?
- For a creative gift, provide holiday-themed paper plates and napkins.
- Dont tease him, ever, about his illness.
- Offer to drive him to an event or activity which he needs to attend. Ill people often dont attend events for fear that they will be in too much pain or become too tired to drive home.
- When you are out together, be her advocate if needed, to make sure she can receive proper seating or assistance. Please be tactful, and dont call attention to her needlessly.
- Say, While youre in the hospital, Ill pick up your mail.
- Find out if you can pick up medications or anything else after surgery, to save the family a trip out.
- Be careful not to try to give lots of opinions about how to treat her illness. If she asks for your advice, give it very carefully.
- Encourage her that its okay to not know if shes making the best or right decision(s). There are no guarantees and shell appreciate your supporting her.
- Dont tell him about your friends cousins boyfriends best friend who had the same diagnosis and was cured through - unless you have truly useful information to share.
- Find out what his favorite author is and go the library and check out books for him.
- Say to her, I know you must need to vent once in a while. Im available.
- Send her jokes via email - but only if they are funny - and never ask her to pass them on.
- Dont make your family member the center of your life, no matter how much pain he is in. You will both wind up worse for it, if you do.
- If he has a disabled parking tag, dont feel so excited about using it. If hes having a good day, he might feel well enough to walk, and enjoy not having to park in the handicapped space. Dont whine about your having to walk farther.
- Buy her some note cards and stamps. They always come in handy.
- Accept that his pain may not go away. If hes accepting it, dont tell him the illness is winning, and hes giving into it.
- Dont say, Let me know if theres anything I can do. People will rarely say, Well, yes! Will you clean my house? Offer something you are willing to do.
- Buy a magazine subscription for him.
- Give her a hand or a foot massage. Touch is an important part of healing, but normal places of massage may hurt her, such as her back or head.
- Hang up a birdfeeder where your friend can easily refill it.
- Understand that you dont need to know all the details about her illness in order to be helpful.
- Ask her if you can help her make or return phone calls.
- Go to an event he has to miss and take photos, perhaps even getting friends to write him notes. Then, take them over to his house and have a mini event with him.
- Buy him a hands-free head set for his phone.
- Dont ask when she is in pain, Whats causing it? She doesnt know. Instead ask, What can I do for you?
- Bring him small gifts and say, These reminded me of the time we. . .
- If shes not getting out much, ask her what shes missing most. See how you might bring part of it to her, if possible.
- Tell him about your life, and dont feel your struggles arent worth sharing. They are. He still wants to be in the game of life and be a support to you too.
- Write her scriptures that you have depended upon in difficult times, using bright markers.
- Instead of saying, Ill pray for you, ask, Id like to pray for you right now. May I?
- Call her up on the phone and sing her a silly song.
- Give her extra help during Thanksgiving or Christmas. As you are baking your Turkey or Christmas cookies, bake her extra. It will lighten her load.
- Go visit for no reason at all.
- Be someone who cares and doesnt give up in the hard times - its the right thing to do. Expect the unexpected; look for the miraculous; be the keeper of the faith.
