I am sorry! Why? Well, when you have Tarlov cysts some days are good, some not so. Expectantly, the people around us have no clue. Let’s face it, a large amount of the time we are pretty good at hiding most of what we are feeling. So what are the people living with us supposed to do? We typically don’t advertise our needs. We hope they will know what we need. Maybe we expect them to read our minds or look deep into our soul. We forget they cannot know which way we will respond. We might need a hug; we might need to be ignored. Until we experience each second, usually we don’t know ourselves. This disease is like any other pain illness, in that our moods can change rapidly. We might be feeling good and cheerful then an hour later watch out. As our body changes throughout the day so will our moods.
So what are our partners, and family to do? Sorry. I can’t help too much, but I can say a hug can never be wrong. You really need not do much more than that. If we need to cry, a hug could be the catalyst that starts the tears. A hug tells us you are open to us sharing what we deep down need to share. But be careful, if you give us that hug and you don’t want truth to come out of our mouths, or you don’t want to give us your time, then be prepared for wrath.
What else can you do? Never, ever, ask us why we didn’t do some chore or go out. If you don’t appreciate being asked why you didn’t do something, then why assume you have the right to ask us? Going out, to us, is a chore in itself. There is no fun in going “out”. We dread just getting into a vehicle, if we have to drive, it puts the buttocks and nerves into a bind and we are lucky to feel our toes by the end of the trip. Then if we do feel them, boy, do we feel them. Also, fussing at us for not going out to take care of a chore is a “depressing” issue. We have to live with fears of our body not functioning properly; we tire out so easily; bending over to pick up something on a lower shelf is like hanging on a cliff with our toes. How exciting to go to the grocery store and get bumped by someone; be so exhausted when you have to go back three aisles for something that has been moved. Oh, let’s just go shopping for the fun of it. Not anymore.
It would help to ask us what we need help with. Let me warn you, if you ask, then you have to do your helping in a responsible manner, and how the person’s place you are taking would do the chore. In other words, do it like they would do it. When we ask for help with something, don’t assume we did not try to do it earlier. Also, if we ask for your help, more than likely, having tried it earlier, we are now desperate for it to be done. If it is Monday and we ask, then, we don’t need to hear the word “later” or “during the weekend”. It is already “later” to us. If we ask, then it could be that when we tried to do it, it did not turn out ‘right’ and our inability has hurt our feelings. We might not tell you that, and why should we? You should know us enough by now to want to boost our spirits.
It also helps to find out what chores we can do and leave those for us. Please, be observant. If we can load that dishwasher, leave it for us. Don’t ever go into the kitchen and slam the dishes around, we are not stupid. If we can’t vacuum, then offer to help find someone to come help with that chore. If we can’t push or ride that mower, then assign it to the teen in the house or down the street. [Yes, ladies, your man just might need some help if he has this illness.] Just be mindful of what we can do and let us do it at our own speed. Taking a chore that we can complete and doing it yourself is demeaning to us, yes, it hurts our feelings and our self worth.
A spouse, sometimes, is the only person a patient has to converse with. If you are not spending time talking to your loved one and helping provide them with entertainment, then you are more or less shunning them. By the time you have come home from work they may not have talked to another living soul. Why can you not get a board game or some cards and spend some time with your patient. They need you showing them some attention and boosting their morale.
If you are afraid of their illness, then please inform yourself, and go to the doctor’s office with them. Just don’t let your fear replace your love. Just be warned, when you do not address your issues, with the patient’s health, you may not be sending signals of concern, love and respect. Those signals may need to come to you one day, and how sad it will be if your actions are turned back on you.
If you live close enough to the patient, then go visit and do a simple chore for them. They may be too embarrassed to ask, but if you love them, tell them it would make you feel good to do it for them. If the patient has been honest with the extended family, about their situation, you should understand. Educate yourself on what they are going through, and on what you can do to help them. I know that some people in my support groups say that they cannot get any family member to help them. Some say that they are being treated like liars by their family. I don’t care who you are, if you are one of them, SHAME ON YOU! How many times has that patient been at the hospital with you, or ran an errand for you? It does not matter if that is your child, sister, brother, sister-in-law, brother-in-law, daughter in-law, they are your family! They should never have to ask you for help, you should be asking what you can do to ease their life. Even if they have never helped you or your family, that is no excuse. Just remember the saying “do unto others”.
If this patient is single and having financial problems, try helping them find ways to support themselves. Not being able to support yourself is very demeaning to most people. Put yourself into their position, how would you feel, what help would you need? But never assume you can feel their pains or inabilities.
If your patient is a young child, (yes, even as young as a few years) learn as much as you can. Inform yourself, inform your family, and inform their school. These children do not need to be treated as handicapped, but they will need different seating. They may have to carry around a donut cushion in their classrooms. Their classmates are going to be cruel, it is your place to go into the classrooms and help the teacher explain what is happening to your child. Your child is going to squirm all day, as they try to get comfortable, in any seat. Let the teacher know this. There may be days your child is going to need to ‘hip sit’, provide each class room with a mat for them. The more you inform everyone, then the more compassion your child will have.
A note for everyone: Children under the age of 16 do get these cysts; they will cause the child to have problems with motor skills from the hips down. The cysts are rarer with children, than they are with adults. From what I have noticed, out of 1000 people that have the symptomatic cysts, maybe 3 children have been diagnosed.
Now, what I have written is not all you can do to help, but it is a start. I know several of the readers of this blog can add more. You can just respond to this post and I will add them as they come across.