Stronger together

One really positive thing about being on the internet and having thyroid disease is being able to compare and contrast your experience with other people. There are so many support groups out there with literally thousands of people sharing their experiences. There is also blogs, articles and information all over the place. While some of this information doesn’t apply to everyone, what it does do, is allow a person to start to see patterns.

When you start talking to other people from other places, you can see whether or not a particular issue that you are dealing with is common with other people. You can help yourself figure out if that crazy thought you are having is something you alone are thinking or if fifty others are also having crazy thoughts. You can find out options that other people have tried. You can find out the good, the bad and the ugly of treatment options out there.

You still have to put on  your critical thinking hats to deal with the information, like you do with anything on the internet. Don’t let yourself fall for lose weight quick, or those “heal your thyroid” miracle sounding cures on the internet. If it sounds too good to be true, it probably is. A little skepticism is a good thing. Mind you, do not close your mind off to everything, but make sure anything you hear you confirm with multiple reputable sources before you try anything you have read about. While there is a lot of good information out there, there is also people waiting to prey on those of us with chronic illness, and we can find things that will actively hurt us in the guise of helping.

If you are open to it, start doing your own research on your thyroid condition. Talk to people online. Join a thyroid support group and start reading what other people are experiencing. This is something that has helped me immensely over the last few years. I have been in several thyroid support groups over the years, and I started seeing recurring topics show up. Topics that you never see in articles online or hear about from your doctor. This enabled me to do some more research and find things that doctors do not seem to be aware of. The reason, for this I feel, is that  doctors know about what they have learned in medical school, they may see a dozen or so thyroid patients in their lifetime or a few more, so patterns of other things do not show up in those situations. If you are online with a thyroid support group, depending on the size you get a much larger sample of people coming together. People will also talk about their entire lives on support groups, not just things they think of as thyroid related issues. When you hear about people talking about obsessive thoughts for instance, or problems with their menstrual cycles and those people number in the hundreds, you start to think just maybe there is a connection. Maybe people with thyroid issues deal with much more than the medical profession knows about, and maybe the thyroid causes much more than just the issues that are mentioned commonly.

Some of the common topics I hear about on thyroid support boards including the following:

1. Obsessive thoughts. A lot of people are finding they are struggling with obsessive thoughts, either dark and negative or just ultra focused on some strange thing in their lives. OCD behaviors also start hitting people, especially people who are hypothyroid.
2. Anxiety in general. Having a chronic health issues like thyroid disease makes people feel more vulnerable and worry more about how to deal with things in their lives.
3. For women, menstrual cycle issues. So many woman have reported extra long and heavy periods, or no periods at all, or spotty periods. More PMS symptoms and more issues with fatigue than normal around their menstrual cycle.
4. For men, loss of sex drive and fatigue and stamina issues. Many men on the thyroid boards report they feel like they are much older  than they actually area. Some of them are finding they are having low T issues as well.
5. Sudden sensitivities to foods. A lot of people seem to be finding that since their thyroid diagnosis they cannot tolerate certain foods. They have new food allergies, or foods they ate for years suddenly give them gastric distress or make them feel ill when they eat them.
6.  General lack of energy. Even when thyroid levels are more normalized with medications, people report that they just don’t have the same energy they did before thyroid disorder. Doctors will tell them that their thyroid levels are normal so deal with it. When they get further testing on vitamins and minerals they find that they are…
7. Low on necessary vitamins and minerals.I blogged about low Vitamin D recently, and that’s one of the big ones that people become deficient after developing thyroid disorder. People who get their vitamins and minerals tested also have reported low calcium, magnesium and other issues. Being low in nutrients can make a person not feel at their best. If you look at all the stories from people online there seems to be a connection between thyroid issues and other deficiencies in the body.
8. Catching every virus that comes around. A lot of people report more illness in general since their thyroid diagnosis. People who never or rarely got sick will catch every cold and bug that goes around. When they do get ill, they can’t seem to get over it as fast. Something that they might have gotten over in a few days will drag on to a week or two sometimes. I frequently see this topic going around, especially in the fall and winter months.
9. Feelings of isolation. Having thyroid disease can be very isolating for people. A lot of people can mentally deal with the idea of an illness you have and then get over. Thyroid disease does not go away. It stays with you forever, and can affect you at any time. Sometimes people with thyroid disease will lose friends and family who just cannot deal with their constant health issues. So a person is abandoned at a time they need support the most.
10. Finding a thyroid support group online can help. Finding the right support group online is generally reported as a positive thing by most thyroid patients. There are many out there with different objectives and personalities, so just about anyone can find one that is helpful. People report when they can share their experiences online with others, they don’t feel so alone. They can talk about feelings that have bothered them and have them validated by others who have been there. They don’t have to feel like that are a freak or a crazy person, and they can find more possible solutions than any one doctor will ever be able to tell them about. The more people who band together, the more information and support will be available for all.

What I have found is that people working together can produce remarkable results. Share your thyroid experiences with others, so they also feel empowered. Share your information you learn so people can go to their doctors more educated and confident. The more of us who work together, the better things will be for all thyroid patients. Together we are stronger!

See Britney at http://www.warriorbutterflies.com or come join her at her Thyroid Tribe closed FaceBook group.

Thyroid Support group Etiquette

One thing that is very helpful to a lot of people with thyroid issues is groups on Facebook. Finding other people who are dealing with similar issues, can help keep you sane, let you know about things you previous didn’t know or never considered and helps you make some friends.
I’ve been in several thyroid groups online and I think a basic primer on etiquette might help a person new to the Facebook groups.

Etiquette, is basic manners, social common sense, and treating others like you would like someone to treat you. You don’t have the added help of verbal or body language online, so what you type is very likely to be taken wrongly. Especially if you do not pay attention to what you are saying and how it might be viewed. Remember that there are lots of thyroid related support groups on Facebook and they all have a different “feel” to them, so if one doesn’t fit with what you need, move on to another. While you are in a group though, these tips will help you be welcome.

1. Read the rules of the group. Usually there is a pinned post, a description or an “about” in every group that details information a new person to the group should know. Find out what is ok to post in that particular group. Some groups are for sharing happy things only, some are to debate different medical treatments, or for women only, etc. etc..Make sure you aren’t the person coming into a brand new group and posting about your fishing trip when the only posts allowed for the group are thyroid health only. People will not appreciate it and you may get banned.
2. Spend a little time reading posts of others in the group before you post. This will allow you to know the tone of the group and get a good feeling for what is ok and what is not acceptable. This is the equivalent of going into a room full of strangers and hanging back a little until you know the subjects being discussed and the norms of what people like to deal with in that group.
3. Know who is in charge. If you can, find out who the owner and admins are, so if you have any questions, you can ask for help, especially before you post anything that you may have any doubts about posting. Most of the time people will be happy to tell you, or you can look and see who posts the things about what is going on in the group.
4. No spamming. This means unless the group is all about selling things, or you have specific permission to post something commercial, do not post it. Also do not post the exact same thing over and over again, that is also spamming.
5. Add value to the group.  If you have knowledge that will help someone, please share. This is what helps make groups great for everyone, sharing new ideas and stories to help everyone understand better.
6. Remember  emotions run high sometimes with thyroid patients. Once you are in the group, remember you are in a group with other thyroid patients. There is a special thing here that you may not deal with in other types of groups. The thyroid as most of us know can affect people’s judgments and make tempers and egos more sensitive. Things can get heated on certain topics. The longer you are in a group, the more you will find out what the hot button topics in that group are, so you can navigate them more easily.
7. Consider carefully. When you type out a post, step up and away from your computer for a few seconds, then go back and read it. Does it seem helpful, friendly and informative? Then congratulations, that’s a good post, send it on my friend.
8. Remember you are online. Remember that text online is your only way to communicate. Do your best to make sure your ability to write online is able to be comprehended by others. If your spelling and grammar is so bad that you cannot get your point across, then you will frustrate yourself and others. Perfect spelling and grammar is not needed, but you do need to be able to communicate effectively enough to get your point across when online. People cannot see your face, or hear your voice to help them figure out what you are trying to convey. If they can’t understand what you are asking, you might get a completely wrong answer from what you actually need to hear.
9. No Poaching members! Definitely do NOT use a group to help you build your own group. Poaching members is not appreciated by anyone. If you have a completely different group than what you are in and think some of the members might like to be in that group also, then send a message to the group owner or admin and find out if they are ok with sharing this information. If they are then you are good, if they are not, then you might find yourself banned quickly.
10. Participation is also key. Comment on something that interests you, or that you have knowledge or, give some encouragement to another member having a hard time. Play nice and you will find a lot of value interacting with other people in thyroid groups.
11. Have fun! Let your personality shine, engage with people and enjoy meeting others like you.

Check out http://warriorbutterflies.com, there are two great closed thyroid support groups that are looking for wonderful thyroid patients to join listed on the main page. 

Or go directly to Britney’s page on the site: Return to Warrior Butterfly Britney page