Supporting a child with an invisible illness

[Big_Crab]

My 17 year old daughter was recently diagnosed with an invisible illness after months of pain and tests. While we now know what she has, there is no cure and she will probably need to have rather drastic surgery in the future to assist with this condition. She lives in constant pain and most days barely has the strength to get out of bed. We really don't know what caused it, and this is hard for her as she constantly wishes she was healthy again and was able to do everything she used to. She really wants to study full time or find work, but because of her illness, she doesn't have the energy. I am sometimes at a loss as to how to help her. Is any body else struggling with a similar issue and could shed some light on what they are doing to assist their teenager?

[Ngaio-RO]

Welcome @Big_Crab I'm so sorry to hear what you and your daughter are going through. My heart absolutely goes out to both of you.

If you have a moment, could you explain what an invisible illness is? I'm not familiar with the term (I Googled it) and that may be true for others as well.

In terms of study there are some amazing online options, would she consider that?

[Big_Crab]

Thanks for the warm welcome @Ngaio-RO. For those who haven't come across the term before, an invisible illness is one that has no outwardly visible signs to indicate the person is suffering. Some illnesses which are considered 'invisible' are migraine, fibromyalgia, anxiety, depression, colitis, diverticulitis, inflammatory bowel disease. The list goes on really. Just because the person with the illness does not look sick, doesn't mean they are not. We are currently looking at what courses she could do online. We were lucky she was able to complete her HSC and a Diploma of Health Assistance Services last year before she completely exhausted herself. She would like to do a trade, but is not strong enough to work 'trade' hours at the moment.

[Ngaio-RO]

Thanks for the explanation @Big_Crab 

It's not something I've given much thought to so I'm grateful you've raised it here. I now have a small insight into how incredibly difficult it must be for your daughter and others with invisible illnesses. 

To me, there's a lot of similarities between this and mental health illnesses, because there are no visible signs, people seem to have less patience or compassion. 

Has your daughter ever looked into support groups? It's amazing the difference it can make when you're able to connect with others going through the same thing.

[hashtagmum]

Sorry to hear about your daughter's illness, @Big_Crab.  I have friends with invisible illnesses but don't know any young people.  In terms of courses that could lead to something not so physically demanding, how about something creative or IT related like web design?  that can lead to more freelance type work that she could do when she is up to it. 

Also if she is interested in trying out different things, she could have a look at some MOOC sites like Coursera.  I can't remember what MOOC stands for but they are basically truncated or taster versions of university courses that you can do online from universities all around the world.  They are free unless you want to get a certificate at which point you pay a small amount for that ($50 or so from memory). 

@Ngaio-RO's suggestion of online support groups is a good one as well. 

[Big_Crab]

Thanks for your suggestion on study alternatives @hashtagmum I'll check it out. We have looked online for support groups @Ngaio-RO. There aren't any that really match her illness, as it is not very common. When we found this, we did start our own online support group and we are slowly growing that. It caters for those who have illnesses which like her's aren't common.

[taokat]

Welcome to the forums @Big_Crab, and thank you for sharing your situation. My heart goes out to you and your daughter and I appreciate how hard as a parent it must be for you watching your daughter suffering.

Can I ask what it is your daughter has? Please do not feel any pressure to answer, I completely respect your privacy if wish not to! I only ask as we may be able to help in finding more resources. 

My daughter has mental health issues which are, as @Ngaio-RO mentioned, invisible illnesses. I like that term, as people tend to judge on what they can or can't see which isn't right. But it's human nature.

Firstly I'd like to say hats off to your daughter for achieving what she has to date! She sounds like a remarkable young woman, and clearly very supported by you.

The online study sounds like a great idea. I wonder if you could give TAFE a call, or a career advisor somewhere, and have a chat to them about your daughter's best study pathway. I know that there are pathways that can be very flexible with varying workloads which may be suitable. @hashtagmum's idea of IT or something computer based she can do from home is great idea, depending what your daughter enjoys.

As with mental illness, being lifelong, management is the only answer sadly. The best advice I was given was to let her cry or be angry about her illness when she needed, and hear her, let her talk and get things off her chest. During those times my interaction is comments like 'I hear you're really frustrated about...', or 'yeah, I can understand why you're upset about...'. If she's crying about how unfair it is, agree with her because it is unfair! It's not to wallow, but to acknowledge. I'm a fixer-upperer, and I was told to back off and not talk about solutions immediately, keep that time about listening and being there for her. There's time for workshopping solutions later. I've found that has helped my daughter with her confidence around her issues, and being able to talk she has learnt to understand herself a lot better which helps with acceptance and empowerment. 

How are you coping yourself with all of this? Don't forget to look after yourself. 

[Big_Crab]

Hi @taokat thanks for your welcome. My daughter suffers from secondary intestinal lymphangiectasia. The simplest explanation is the lymphatic vessels in the intestines dilate and causes severe diarrhea and the loss of protein. It also prohibits the absorption of nutrients. She basically lives with constant pain in her stomach, and because her body does not absorb nutrients correctly gets tired very easily. I totally understand about your daughter's mental illness, my husband suffers depression and my son has anxiety. We have our good and bad days. Another area she is interested in is special effects makeup. She did a term of it at school and was extremely good at it. It is another avenue for us to explore. Thank you for asking after my well-being. I am learning self-care at the moment, and realise I can not support my family if I am not 100% myself.

[taokat]

I've had a bit of a read of what info I could find regarding your daughter's illness @Big_Crab. What an awful illness for your daughter to have, my heart goes out to her. Being in constant pain would be draining enough, without the nutrient loss. I admire her resilience and motivation. Special effects makeup sounds amazing!

You certainly have a lot on your plate. It must be very draining for you too. Good on you for taking time for self care. There is a topic on it in the forums with some great suggestions.

Take care for now.

[taziness]

Hello @Big_Crab

Welcome and thank you for sharing. I've been wanting to make up some "invisible illness" badges! I have a diagnosis of Emotional Dysregulation or Borderline Personality and have lived with pain, Fibromyalgia for many years. Self management, yes, is everything. A single mother of three, it's taken some time to get there and still always evolving  

One of the best treatments I have come across is Dialectic Behavioural therapy, a little like CBT but rather  more specific.  Mindfulness, mindfulness, mindfulness....it's all the rave, but nothing like body and mind awareness with breath. This has helped greatly for me to recognise my own symptoms and to manage accordingly.

Your daughter also sounds really creative - such a good outlet! I came across this online course recently - I'm yet to do!! - and I think it's open to everyone, http://arts-and-health.thinkific.com/, with University of TAS, which looks good....sometimes it helps me to have some creative guidance.

Medication - so important to get this right! I hope that you have a good doctor and psychiatrist or specialist as this might be part of the long term plan. Pain management often begins with Opiods, and if you haven't heard already, this can be a very long and wry road.

I hope any or some of this is helpful. Look forward to hearing how you go