- Patients, what advice or tips do you have for caregivers?
Ahh, see this sort of question is both fascinating and scary because I always worry that I will upset people. I shall give it a go nonetheless.
Depression & Anxiety disorders.
My first piece of advice to any parent that has a child come to them and express concerns that they might be depressed or that their worrying isn’t normal is not to brush them off. I think many parents fall into the trap of thinking a child is too young to have these mental illnesses and that just isn’t true. Even if you think there is nothing wrong with them, take them to see someone anyway because they might just be telling the truth and the earlier things like these are diagnosed the better. I’ve had my conditions since I was a very young child but didn’t get any official diagnosis until I was an adult and that is a lot of pain I went through that maybe I didn’t have to suffer. Hard times might still have been hard but at the same time easier.
Limitations change when you have a mental illness. Pills can help but they are not magic fixers. People have good days and bad days. If praise helps a person, praise them on the good days and if it doesn’t then be quietly proud. Sometimes having things people managed pointed out makes them think of the things they didn’t do, or of how for someone else that achievement might not be a big deal but a normal part of their day. People handle things differently. Not everyone will want people to point out the things they have done and others will constantly be looking for others to notice even the slightest bit of progress. Care givers and/or family and friends have to observe and learn what works best for the person in question. Accept when someone says they can’t do something. Maybe you think they can but they don’t and badgering tends to make people less likely to try something.
Read. Get a hold of information and learn up about the illness your loved one is dealing with. There is probably a great deal that people will never understand unless they experience it but reading up on how people are affected can help a person be there as a help. It will also help people understand the emotional toll things like this have and help understand why the person dealing with the illness might get frustrated and upset. I find that understanding more about the illness leads to less arguments and tension around it and the person can focus more on getting better and not preparing for the next argument over whether they can or cannot get out of bed that day.
Endometriosis & Thyroidism & Chronic Fatigue
I’ve lumped these gremlins in together because the points I want to make are basically the same. Everything I said before still stands but with some added bits. The thyroid will have good days, bad days and downright evil days. Don’t push a fatigued to do something they have told you they can’t do. Living with this is horrible and being unable to do things is hard mentally. Demanding too much of someone that is fatigued can cause panic and anxiety and a general feeling that they are never going to get it all done so why bother with any of it? Small goals are easier to achieve and can be built up over a longer period of time.
Offer help but don’t wrap people in cotton wool either. It can be hard with endometriosis for example to get up and move around if you’re in agony. Sometimes it means it is great to have someone step in get things done and sometimes I personally prefer to take longer and get it all done and have the satisfaction of knowing I still managed to get things done. The same with the fatigue. I like to prove to myself that okay a list of chores took me three days and not three hours but I still did it in spite of my illness. It is great to offer help and support but it is important not to get offended if it isn’t accepted. In my experience it tends to be more about the person with the illness than anything the person offering help as said or done.
Specifically with endometriosis it is about realising that it is a serious condition. Take people seriously when they say they are in pain or that they can feel the aches even if you are aware they are not menstruating. That doesn’t matter with endometriosis. It can hurt at any time and it isn’t always the same levels. I think for carers/parents or young women beginning their cycles, if they claim to be in terrible pain, don’t tell them every woman has it and tell them to get on with it. Take them to a doctor. It might be nothing. They might just have painful cramps or even just a low pain threshold or they might have a serious illness. Too may suffer in silence and give the disease time to spread and do more damage because they do speak up and promptly get brushed aside.
If someone is diagnosed with Endometriosis, again, read everything and if it is a child in question work together to decide a treatment plan. It may be ‘your’ child but it is ‘her body’ that is being impacted and I strongly feel that all women should have a say in their care of this disease. Some will want to talk about it and others just won’t. A word that comes to mind for me with endometriosis is ‘traumatic’. The symptoms are truly horrific at times and I don’t like talking about it because then I think about it and then I remember the pain. It isn’t about being immature, it is about the whole thing being almost triggering. Respect people’s boundaries with this illness.
Type 1 Diabetes.
The experts on Diabetes are the diabetic endocrinologists. Then it is the diabetic. Then it can be their care givers. Sure, a child might not know all the technical stuff or what insulin to take but they know the really important stuff like how it makes them feel inside. Sometimes parents don’t know what is best for their child’s diabetes. Sometimes diabetics don’t know what is best for their own diabetes. Sometimes they do. Minds must be open at all times when it comes to this disease.
Avoid, at all costs, telling your child they can’t do something or eat something because they are diabetic. Golden rule. If they want to be a soldier that is out but don’t leave it on the ‘your condition is stopping you reaching your dream’ part. Try think of something similar or in the field that they could do or suggest another of their interests and just try avoid letting the conversation die on ‘life over’. On the food side of things, that isn’t such a big deal these days with the insulin and regimes that we have available. Birthday cake is always going to be hell to guess at but one high can be fixed, let them eat cake! I think the more someone is told they can’t do something or have something ‘because you’re diabetic’ the more likely they are to snap, rebel and do it all and not being within reason at any point. Basically, try to avoid making diabetes a huge deal. You’re scared? Your child is probably not as scared as you are because it is hard to understand what diabetes means for the future when you’re six. It starts to matter when someone starts to say you’re not getting chocolate cake anymore because your parent is too afraid to risk it. Because, that is basically what it comes down to isn’t it? Fear that we’re going to guess the carbs wrong and a blood sugar level will come out of it badly. Trust me in saying one had blood will do less damage than one pieced of denied cake. The blood sugar will be forgotten. That cake will be burned into the retinas of a child’s mind for years. Teenagers have balls of steel when it comes to health risks and where a parent was afraid to trial and error their way through cake, they won’t be. And once they have had one slice a lot of them are in danger of just demolishing the whole thing and THAT can be what puts them in hospital. My own mother famously ate an entire packet of digestive to spite her mother refusing to let her have one in place of an apple. (How does anyone even do that? I’d explode)
I think a lot of teenagers need to see their doctors themselves, at least for part of their appointment. I get a lot of worried looks when I say that to mothers of diabetes and I get it, I do. Teenagers are very private people and I lied my way through clinics for years until my mother agreed to let me go in alone because no one wants to answer questions about sex or sexual organs or their functions in front of their mother. I would bet, especially boys. I mean seriously, they get asked about erectile function. Who isn’t going to answer the way the doc wants to hear in as quick a time as possible? I think it is horrible for parents/carers to hear but by the time is a diabetic is a teenager their constant presence may be more of a hindrance than a help. Maybe if I had been in there with my doc alone sooner, I’d have one, taken more responsibility because the doctor would be forced to have conversations with ME the diabetic and not my mother, and two I might have had my endometriosis diagnosed sooner. There is also the fact that soon they will need to take the full responsibility for their disease and that includes when they get things right, wrong, or have to start enquiring about change for themselves. Isn’t it better they learn while their parents are still around as a safety net then being thrown into it themselves when they leave home? Parents can say they will be there all they like but can you 100% guarantee that your child will let you call them to work out their insulin for their dinner when they are having their boy/girlfriend around for the first time or cooking up a meal for their pals? There is nothing stopping the first half of a doctor’s visit being between diabetic and doctor and then once they have talked over what to do next, parent returning to the room to get clued up on things and hearing all the rest results.
I think you have to let teen diabetics try and possibly fail miserably. Chances are they get seen every few months simply because they are teenagers and the doctor will catch any chance in control with a parent taking a step back. An adult is more likely to just stop going all together and then the damage is done before anyone notices.
Don’t push treatments on unwilling patients. Another golden rule. The doctor thinks an extra injection is a great idea so mum talks over daughter and suddenly she’s taking another one. But daughter doesn’t want to and that is a huge problem. It can fester resentment, could cause child to stop paying attention to information because they feel they don’t get to make decisions anyway, and in the worst case might just cause the child to not take said injection despite being told to, messing things up and or leaving puzzled doctors wondering why things are not working. This is not me being dramatic. This is the reality for clinics all across the country and the world. Rebelling teenagers that feel trapped between their ‘team’ or health professionals and family, their diabetes, and the life they would rather be living that didn’t involve diabetes. Make decisions together.
When it comes to adults. Unless someone is for other medical reasons physically or mentally not capable of taking care of their diabetes, they probably don’t need a care giver and someone who thinks they are probably needs to stop back. Just because someone’s results are not perfect does not mean they don’t know what they are doing. There are rules for diabetes but the diabetes disease itself isn’t always fond of following them.
Diabetes is scary but the more afraid of it you are the bigger a monster it is.